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Anyone have Coeliac Disease and Type 2?

Discussion in 'Gluten-free Forum' started by pinkiepunksmummy, Nov 23, 2015.

  1. pinkiepunksmummy

    pinkiepunksmummy Type 2 · Active Member

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    Hi, this might be long, and will be complicated, I will try to give all the facts and not drip feed, I could do with some advice please!
    I am diagnosed with:
    asthma
    IBS
    allergies to :
    fish
    shellfish
    most fruits
    latex
    perfumes/washing powder/shower gel/printer ink/hair dye/pollen/dust mites/etc.
    statins
    Ramipril and other blood pressure meds.

    I have been Diagnosed with Type 2 Diabetes for three years now, first two years I had good control, but since being swapped from Metformin to Gliclaide (1x 80mg per day), I have lost control. I kept telling Diabetes nurse, GP's, nurse, etc. but no one was very interested! Finally got sent for a blood test, Hb1Ac was 61 last week, emergency appointment with Diabetes specialist GP is on Tuesday.

    I have IBS, was put on Metformin, which gave me the usual tummy problems, switched to SR, no better, switched to Gliclazide, blood sugars spiralled out of control, stomach no better.

    Next, it was found I had a Vitamin B12 deficiency, I was prescribed a course of injections, (last December) but I was allergic to them, so had to stop. This triggered an allergy to antibiotics.

    I kept thinking my stomach would settle down, once off Metformin, but it hasn't.

    I went to GP, told him I suspected another food allergy and he said sounds like Coeliacs, (which I Googled and have all the symptoms) I had the blood test which was negative for antibodies, so got referral to gastroenterology and allergy clinic.

    I have awful cramping stomach pains, hot and cold sweats, nausea, sometimes vomiting, diarrhoea, going to toilet 3-4 times most days, up to 8 times on a bad day or if I don't take Immodium. I have awful wind, bloating, really fast bowel transit, tender stomach and terrible stomach pain.

    I already do low carbs, less than 100 grams a day.

    So, I decided to try cutting out gluten, and it has made a huge difference...my stomach pain has gone, no more diarrhoea, no bloating, no wind.....and I feel so much better, I've got more energy and no longer feel sick all the time.

    But, the most dramatic change is my blood sugar - it has gone from average 16mmol to normal/low! I am still eating carbs, and same foods as before, rice cakes instead of toast, jacket potato instead of spaghetti, etc., just no grains.... (tried gluten free pasta today, it put my sugars up to 11.4, with a Gliclazide 80mg and two hours after eating. Before eating it was 4.3...won't bother again!)

    Also, I've been struggling again with low blood sugars between meals...it seems to drop rapidly so I feel faint, shaky hands, and very 'odd'. Lowest has been 2.6. The doctor has never really listened to me when I have said this in the past.

    So, I don't know what to do....I should be eating gluten up until I see the gastroenterologist, but can't face feeling so ill again - the diarrhoea, tiredness, high blood sugar giving me monthly thrush, spots around my nose and feeling generally rubbish. But I don't want low blood sugar either...

    The doctor I will see on Tuesday is not very easy to talk to, only interested in diabetes, so difficult to talk about anything else like coeliacs/wheat allergy affecting sugars with him.

    The other GP I see will not entertain the possibility of coeliacs because of lack of antibodies in blood test, and won't discuss diabetes as the other GP specialises in it.

    And I'm going to get nagged because I haven't had my retinopathy screening this year....I had it last year and was blinded for 24 hours by the eye drops, no-one can tell me if this is 'okay' or an allergy/sensitivity to the drops...I'm too scared to have it done again, in case it damages my eye. (I do have regular optician check ups) and because I can't take statins for my 'high' cholesterol of 5.1!

    Has anyone else had any experience of Coeliacs Disease and Type 2 Diabetes that could give me some pointers please?
    Thanks for reading!
     
  2. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    Your endoscopy will be a complete and utter waste of time if you have eaten gluten before the test is done, the GP should have warned you of this.
     
  3. pinkiepunksmummy

    pinkiepunksmummy Type 2 · Active Member

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    Yes, I realise that, it was just a personal experiment, bearing in mind it will be several months before the gastro referral comes through, I am going to stay gluten free for a month, let me and my body have a rest from all the symptoms and then go back onto gluten ready for the appointment.
     
  4. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    You need to be eating gluten for at least 6 weeks.
     
  5. spencerw

    spencerw · Newbie

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    I have coeliac disease and type 2, for 8 years I kept of diabetes medication by diet and exercise alone. if you dont have coeliac disease it may be that you are allergic to wheat alone only, try using bread made with spelt flour.
     
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  6. Ferricklee

    Ferricklee Type 2 · Newbie

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    Sounds like you are having it tough. I was diagnosed as coeliac 10 years ago. There are 6 coeliacs in the family but I am the first to have been diagnosed with any form of diabetes (started as gestational but has stayed and is type 2 now). Gluten is in so much more than breads, cakes and pastas. My sister was diagnosed as coeliac in uk after a biopsy. Blood tests came back clear but like you she went on a GF diet anyway. Had to come off it for 3 weeks before biopsy.... Was horrendous.

    Can you speak with an alternative doctor and get another opinion?

    I also have asthma, exzema, severe allergy to nickel but since my diabetes diagnosis have been following a more plant based diet and keeping my excercise in check.

    Really struggle with metformin on my stomach too so feel your pain.

    Hope you get some answers soon.
     
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  7. heather_angel

    heather_angel Type 2 · Member

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    been there done that.try "better than "pasta and noodles can get on e bay lo carb but doesn' t hurt gut. change your doctors or get a medical book from the lirary and shove it under their stupid noses. metformin better taken during a meal less side effects get
    used to a limited diet what doesn't get you on one diet will get you on the other but you get used to it dont bother with gluten free products most are full of carbs and sugar make your own. doctor can prescribe gf flour for you. good luck regards heather
     
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  8. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    What does the G/F flour contain if not carbs? Very high carbs at that :)
     
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  9. heather_angel

    heather_angel Type 2 · Member

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  10. heather_angel

    heather_angel Type 2 · Member

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    only use a very small amount! try black beans ,coco,etc works for me!!!!!!!!!!!!!!!
     
  11. CarbsRok

    CarbsRok Type 1 · Well-Known Member

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    A double yuck as far as I'm concerned :)
     
  12. pinkiepunksmummy

    pinkiepunksmummy Type 2 · Active Member

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    I've also got a referral to an allergy clinic, so hopefully will find out soon....I was thinking it was probably another food allergy, but the GP suggested Coeliac disease.
     
  13. pinkiepunksmummy

    pinkiepunksmummy Type 2 · Active Member

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    I must admit, I'm not looking forward to going back on to gluten!
    I also have a severe nickel allergy, which is apparently why I was allergic to the Vitamin B12 injections....if only someone had of asked me first...it was the dermatologist that I was referred to for allergies was the one who realised I had the deficiency. Since having the reaction I can no longer wear my silver earrings :(
    And apparently, Metformin should never be prescribed to someone with IBS, etc. anyway - it is evil!
     
  14. pinkiepunksmummy

    pinkiepunksmummy Type 2 · Active Member

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    Thankyou for all the replies :)

    I'm trying to just eat alternatives rather than gluten free foods, I did try Gluten free crispbreads, but they were very sweet.
    I'm not fussy with food but have so many food allergies that it is easier for me to steer away from processed foods anyway.

    I saw the Diabetes specialist GP today, he was concerned that I am getting such low readings. He said I am not eating enough o_O and need to eat "a good breakfast, eggs and toast, then more toast 2 hours later, then lunch and toast 2 hours later, then a good dinner". I never thought a doctor would tell me to eat more!! Good job I am not trying to lose weight, but I don't want to pile it on either...so much for low carbing!
    And he has changed me to 2 x Glimpiride 1mg tablets a day instead of 1 x Gliclazide 80mg a day, I have to go back for my annual review 3rd December, where he will review the tablets.
     
  15. toulouse-tom

    toulouse-tom Type 2 · Member

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    I have stopped eating most bread except home made porridge bread (lots of recipes around online but basically oats, natural yoghurt, bicarb of soda, an egg). It is really easy to make (you just mix it in a bowl, stick it in an oven), you can customise it (seeds / flavourings / bran / other grains), it freezes well and goes really well with sweet and savory. You cant toast it though. No yeast or gluten, very low GI / sugar and lasts a week without going off. If you have ever been to Ireland and tried Soda Bread / Brown Bread - it's just like that. I live in France and my colleagues here now think I'm a culinary genius.
     
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  16. niccolino

    niccolino Type 2 · Member

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  17. niccolino

    niccolino Type 2 · Member

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    Jeepers, you're having a dreadful time of it. I'm type 2 & am intolerant to wheat, gluten, rye, oats, dairy, most scented products like soap, cleansers, etc, due to M.E. & accompanying Fibromyalgia. I gave up with medics & just plough my own furrow as I found out through elimination processes (& trial & error) what suits me and what doesn't, eg. I can't eat fresh fruit & dairy of any kind together, & I can't eat fresh fruit & nuts but can eat dried fruit & nuts. I was told I 'had' to eat wheaty gluten products for several weeks before having the (dreadful endoscopy) test for coeliac, but refused to do it as I wasn't going to put myself through hell for weeks just so a clinician could see for himself rather than believing what I described to him happens. I have a much calmer gut now (apart from when I had orange juice & cheesecake on a night out because I thought it would be all right - wrong! Oh boy, the cramps! Like giving birth to twins!) I can't have metformin, not because of the gut probs, but because it causes dreadful depression (as do certain antibiotics & pain killers I have for the fibro & scheuerman's disease in my spine, which is a well known problem for people with M.E. even though doctors still don't seem to believe this. I haven't tried any other diabetes medication but have my annual review soon so will see what the diab nurse says. I, too, have adverse reactions to the eye drops used in the retinopathy test - I have a hypo each time! I find I react to anything that has adrenaline in it (because of the M.E.) so have scandanest local anaesthetic when needed at the dentist or for small ops at the doc's surgery, and I can't have the lignacaine either - my doc & dentist roll their eyes at this but I know it affects me so couldn't care less what they think as long as I have the stuff without adrenaline & lignacaine. People, including medics, don't believe that I have such curious health probs & adverse reactions to meds & foods, so I just do what I think is best for me which can be hard sometimes, esp when out with others for a meal, but I do the best I can. I hope its helpful to know that you're not alone. I read a book on diet yrs ago which gave instructions on how to find out what foods the body reacts to. You have to wait 72hrs after eating something to see if there's any reaction, and not eat anything else that may affect you in the meantime. Once something is eliminated from the diet it doesn't mean you can never have it again as you can try and reintroduce it after being off it for several months. I find I can eat a little wheat & dairy if I'm going through an ok patch with the M.E., but if M.E. symptoms are present there's no way my body will tolerate either of them. Ho-hum! I see a dietician at my local surgery who is much more sympathetic & she advised my doctor to prescribe gluten-free bread which, tbh, is only fit for toasting but at least it means it is recognised that I have an 'intolerance' (is what they call it) to wheat & gluten. Because I've not been diagnosed as coeliac I can't get other food stuffs on prescription so have to buy the wheat-free/gluten-free stuff myself, which is quite expensive but oh so worth it.
     
  18. AlexTreville

    AlexTreville Type 2 · Newbie

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    Coeliac basically guarantees Diabetes...from reading on the web; about 10% of Type 1 Diabetics are Coeliac as well. I was diagnosed with Type 2 Diabetes 3 years before I went off gluten after my niece was diagnosed, and I had the Red Cross check my Alleles, and came up positive for the genetics. That only costs US$100.00, and that and some improvement in your symptoms will eventually convince the doctors. I have since been re-diagnosed as Type 1 Diabetes, although it might be considered 1.5 in the UK, as they cannot tell without expensive testing, which I am not scheduled for yet, whether I am resistant to insulin, or just have beta cell failure. You do without the necessary nutrients long enough and you will get very sick in one way or another.



    I was not tested by a Doctor for the Coeliac...I had all the supporting diagnoses spread out over my entire life, and I wasn't going to play any more with the medical people, since they had missed all the information they had under their noses. Your health is your responsibility...not theirs. After shedding all bread products, I added in a lot of ionized minerals, and got better...unfortunately ionized minerals (the kind you can absorb in your stomach) are so sour that a lot of grape juice eats up your carb allowance while your body recovers from the gluten. In my case, it simply moved up the need for insulin, as I have to get the minerals somewhere, and I am barely tolerating cooked vegetables after two years of non-gluten. Undoing all the years of not knowing what was wrong is a major problem for every Coeliac, even if you just started being unable to keep food or water down. Once you start the vomiting and diarrhea from the gluten a lot of damage is done. The Diabetes is actually just an end result of severe starvation on a carb diet. The huge amount of sugar in your blood simply burns out your beta cells...presuming they were working to begin with.



    I went off gluten 2 years ago May 20th, and still got sicker because of the Diabetes worsening. I just went on insulin three weeks ago, since I am contra-indicated with 4 meds for Metformin and such, and don't know where I am at yet...or even what to eat, since I have so very little nourishment out of my food, and can't digest things well yet, though I am better this last week as I raise my dosages of Levemir. I was able to get out of bed for the first time in months without 16 hours sleep...it is amazing what a difference is made in how you feel once your body begins using some of the calories you eat. Without sufficient insulin to use up the sugar in your blood, as well as force that blood sugar into your insulin-resistant cells, you will not feel better. Less sugar in your blood seems like an easy answer, but it very hard to live with.



    My doctor believed me about the gluten because I was so much better after foregoing gluten voluntarily that I went off several addictive meds, which actually convinced him that I must have a problem with gluten. My niece was not diagnosed even after paying for the testing at the famous Mayo Clinic, because Coeliac is so easy to miss. If they don't find a nice patch of burned off villi, they say you are fine. She too was eventually diagnosed after getting noticeably better after going off gluten...because, if you are willing to do without most of the carbs that are tasty, you must be insane, or a real live Coeliac.


    Work with your Doctor by changing your diet, keeping food diaries, and eliminating old problems, then just deal with the Diabetes to the extent it does not resolve. Living without starches to survive on small amounts of insulin is a very tough lifestyle, and no one does it until they are forced to by having no other choice. Diabetes requires elimination of all carbohydrates possible, and Coeliac can only be helped by eliminating what you would rather eat if you could. If you have a damaged body from years of bad medical advice after your maximum resolution of both conditions, the doctors will treat the damage to the extent that they can.



    Gluten free flours are white rice, tapioca, potato starch, and beans, primarily, and taste about as interesting as dried paper, so there is very little point in it. I occasionally buy a loaf of Udi's frozen Flax and Fiber bread, as a sandwich is really nice now and then, but it's all pretty pointless. Give up bread and cake as much as possible, and switch to muffins...it is that easy, particularly after you spend an entire year making bread recipes that never turn out like bread, and cakes that taste only of the sugar you are not supposed to be eating. Recipes with stevia are so light that you need heavy grains just to keep the stevia from floating away, never mind actually have a smooth crumb.



    Oats are tolerated by a lot of Coeliacs, and some oats don’t have gluten…it depends on the source. I lived on oatmeal and mashed potatoes with cheese in it for 9 nine years before I was medicated enough to add other foods back in...and yet, no one noticed I had Coeliac disease...just every other possible complaint in the book. Ah, Doctors...so uninterested in what doesn't make them money. (I'm American...with the great health care system we devised and were praised for when Insurance Companies were paid by Corporations as part of your salary. The profit motive worked fine until Corporations found they didn't need salaried employees anymore, and Insurance Companies became aware of the many sick people the Standard American Diet created.)



    These days I am attempting to keep down enough cooked vegetables to drop the mineral intake in the grape juice, which even when diluted with water screws up your blood sugars, and if you have Coeliac badly enough, it is the only way to get the necessary nutrients in order for your body to heal. The minerals in ionic form are about US$250.00 per month, which depletes your savings at an alarming rate, and since I have a 50% co-pay for the insulin and other meds, that puts me at $700.00 per month just to stay alive...food costs extra, and it is cheapest to raise it yourself. This new occupation of vegetable gardening gives you something to do to better your miserable existence as you heal...because you can heal, from the Coeliac, and the Diabetes, as soon as you can eliminate all the carbs you used to live on. It does take time, and a lot of Grace to accept the hand you have been dealt in the genetic/circumstantial lottery designed into the universe, but after a while, I understand that you stop struggling to eat what is killing you.


    I haven't finished struggling yet, but I hope to...soon.
     
  19. pinkiepunksmummy

    pinkiepunksmummy Type 2 · Active Member

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    Type 2 diabetes DOES NOT guarantee Coeliacs Disease.

    I'm not sure why you feel the need to have a rant at me.

    Anyway, I have my first appointment at the gastro clinic next week so hopefully I will find out soon if I do have Coeliacs Disease.
     
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  20. AlexTreville

    AlexTreville Type 2 · Newbie

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    I said Coeliac virtually guarantees Diabetes, if left untreated. I wasn't ranting either...just not sugar-coating my words, because the sooner people find out that they must avoid what is making them sick, the sooner they will decide to only eat what will make them well.


    Diabetes does not create Coeliac...Coeliac, on the other hand, by its very nature, will deprive your body of every nutrient that your brain can use to keep your pancreas and liver working to keep your blood sugar in balance, and consequently, if untreated by the avoidance of Gluten will have a high probability of burning out your beta cells in your pancreas, along with causing every other hormone secretion to become erratic or non-existent. Being both a Coeliac and a Diabetic, and facing the fight to stay in some kind of food balance every day, I am merely telling you and anyone who will listen what I have found to be true after a lifetime of suffering the effect of deterioration via starvation of nutrients.


    Not all people who develop Coeliac Disease, or have Gluten intolerance without the Disease present symptoms immediately, even with the genetic pre-disposition to do so, and you can spend most of your life feeling perfectly well until one day everything falls apart. Others, like myself, are stuck with the Coeliac disease working in full flight from the womb, and have never lived a normal life, but have always been sick from the ailments that Coeliac Disease creates by nutrient starvation.


    In my case, I have always had Coeliac Disease...but my body processed sugars reasonably well until about 5 years ago when that fell apart on me. What was difficult was that I found out about the Coeliac Disease only two years ago, but all the information was there in my medical file except the Coeliac Alleles on my genetic profile. And it is not uncommon for this to be the case.

    I had been led to start vegetable juicing as a last desperate hope to raise my nutrient levels, which were terribly bad on the medical tests that were in my files, and the harder I fought for normality, the sicker I got, because even with all the hundreds of dollars of organic veggie juice, I was not taking up sufficient nutrients to begin to heal...I merely got sicker since my body wouldn't process the small amounts of fiber in the juice, nor pick up any nutrients as they passed through my system. These days, I am trying to eat the actual vegetables, cooked, and am still having problems, but at least I can keep them in my body for an attempt at digestion...I am merely wise enough to continue the liquid minerals and vitamins until my body gets uses to real food.

    And the Doctors, knowing nothing of Coeliac, diagnosed me with so many diseases and immune disorders that they completely explained away everything that was wrong with me. Then they gave me medication so I wouldn't be in too much suffering, because they felt they could do nothing more for me. They were wrong, but if I had not had a niece with the same problems, and had my genetic profile checked, I would never have believed the answer was so simple. Being a diet controlled Diabetic wasn't a problem, but finding that I was a Coeliac was and then 4 months ago my beta cells gave out altogether, and I am now on a great deal of insulin that actually makes my body take up the blood sugar from my blood.


    The world has gotten very difficult to live in, but I have spent the last 7 years studying everything about my situation, biology, and nutrition, and simply offer my knowledge, a description of my own problems, and a hope that someone...anyone...will get the information clearly and to the point from the first moment of their symptoms, and start to work on the solutions.


    Babies that are born as Coeliacs are often horribly mistreated by the medical profession that seeks to blame the parent for the child not being able to digest what are normal foods for all but about 1 out of 141 white Europeans...there are other statistics for other races and racial blends, including Native American, which is in my genetic picture. Basically, if your genetics would have kept you from starving to death easily during a famine 2000 years ago by turning every carb into storable fat, when carbs were not plenteous, and grains like Wheat, Rye and Barley had a smaller gluten protein, you have a situation that is tailor made for diabetes. If you also are sensitive to or completely intolerant of gluten, you cannot avoid Diabetes without avoiding all starchy carbs because your body has never had the other nutrients to manage your digestion and hormonal secretions. If you are intolerant of Gluten, you simply do not get much of the vitamins, minerals, enzymes, proteins and other necessary keys to a balanced body even though you ate the foods they came in, because your upper GI cannot separate them from the passing foods, and thus, you have a guarantee of being a diabetic in our modern day, flour and sugar filled world.


    It is finding out about the Coeliac that, if you take a hard line with no gluten ever, you can have your villi grow back; you can consume the vitamins, minerals, enzymes and probiotics that are required for healing, and if you are persistent, you can reduce or eliminate your insulin problems. Betas cells do not grow back, I am told, but if there are any left, they can work with a very low carb diet to make your life mostly symptom free, and manageable by diet alone. And the less insulin you need to add to your body, the healthier you become.


    I was just saying that it is a hard road to walk, and I have not succeeded in full. I can say, however, that I am getting better.
     
    • Winner Winner x 1
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    #20 AlexTreville, Jun 12, 2016 at 7:12 AM
    Last edited by a moderator: Jun 12, 2016
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