Anemia and possibly ceoliac

[sjm1308]

Get referred to a hematologist about the anemia. Being "concerned I wasn't absorbing the iron" doesn't make sense if your Hgb rose from 9 to 13. Uncertainty in diagnosis is not in your favor here. . And a gastroenterologist about the celiac thing.

OK thanks bignewt am going for a blood test next week for ceoliac then again in 2 months to see if my iron levels have improved any. I will speak to her tomo for clarification

 

[Kristin251]

She has no problem with corn. Or rice. Both grains.

Well we’re all differnt aren’t we.
That’s how an elimination diet works so well. Eliminate it all then add back one at a time

 

[Kristin251]

@Kristin251 funny you should say that I feel so ill after any diary especially milk! Have sort of cut back on that anyway as it makes me feel so unwell. Had never realised the two went hand in hand x

You could try unsweetened vanilla almond milk ( makes my tummy rumble) or soy milk ( I don’t eat anything soy) but one or the other might work.
I didnt at all care for almond milk in coffee though.
I can’t even think about cows milk without feeling awful.
Different cheeses matter and certainly portions. I have one oz of Brie and that’s about it. I went for many years without any dairy, including butter

I still think grains would be a bigger culprit.

 

[sjm1308]

Thanks @Kristin251 I think no matter what my test says I'll def try to cut out as much as possible xx

 

[Kristin251]

Thanks @Kristin251 I think no matter what my test says I'll def try to cut out as much as possible xx

Sure thing!! If you eat sandwiches, lettuce wraps are wonderful. I actually prefer them! All sandwhich fillings work and I even love a crumbled rare burger on them. Never tried peanut butter but I have a spoon.

It’s certainly a change but like anything else we just need to find a new routine.

I put sauces that I’d put on grains like pasta or rice just in my proteins. Or I use olive oil and herbs. No need for the stuff underneath.

Most of my meals are built around protein avocado and a few veggies. Too many veggies bother me too haha. The list is endless.

 

[TheBigNewt]

Just an FYI. Even if you don’t have celiac you could still be gluten intolerant. Neither my daughter nor myself are celiac but we are both very intolerant. She moreso than I. There is no test for intolerances. They’re not allergies.

True, there is no test for "intolerance". But there is a test for the disease, and that is endoscopy with small intestinal biopsy. That's what my niece has. She's a twin and developed malabsorbtion when quite young. She started to look very different than her sister. Bloated abdomen, muscle wasting, constant diarrhea. On gluten free she was all back to normal within months and has been ever since. Gluten intolerance is now quite the rage on the internet. Sort of like hypoglycemia and mitral prolapse and fibromyalgia. Sure some people have it but you can Google anything these days and there's what you suffer from lol.

 

[Circuspony]

Might be worth asking to be tested for B12 as well. A friend of mine spent a very long year feeling exhausted with all normal tests coming back clear, read about B12 and had to really push her GP to test her levels. Turned out they were very low and she needed a course of injections. I don't think they ever got to the underlying cause though.

 

[TheBigNewt]

Might be worth asking to be tested for B12 as well. A friend of mine spent a very long year feeling exhausted with all normal tests coming back clear, read about B12 and had to really push her GP to test her levels. Turned out they were very low and she needed a course of injections. I don't think they ever got to the underlying cause though.

I think "pernicious anemia" due to B12 deficiency results in a different size hemoglobin molecule (big) than iron deficiency anemia (very small) and they report the sizes in the CBC test. In addition B12 deficiency isn't really due to not taking in adequate B12 in the diet, it's due to lack of "intrinsic factor" which is normally produced by the body and allows B12 to be absorbed in the GI tract from foods. There is no intrinsic factor supplement to take for it, hence the need for intramuscular injections of B12. The OP said her Hgb came up from 9 to 13 with the addition of FeSO4 pills which wouldn't happen if she was B12 deficient. BTW I think that there is a diagnostic test for lack of intrinsic factor if my memory serves me.

 

[DCUKMod]

Thanks so much Justine. You don't happen to know if I can take spatone alongside the ferrous fumarate? X

Hi sjm1308 - I've had the various tests for Coeliac (a what feels like a zillion other thing), to try to sort out some different symptoms to yours.

The Endo had a laid a bet with me that I'd turn up something AI, due to family history and so on. He lost, but didn't reduce his bill at all!

One things he did say to me was, even before the test results were back was to recommend I adopt a GF diet irrespective of the test results, because "people with AI issues generally do very well when they go GF". As I was already low carbing, and he supported that I shouldn't carb up for the tests (on the grounds doing so would not reflect my usual way of living), I didn't have the same degree of change required by many going GF.

My results were negative and investigations are ongoing, now in another medical discipline, but in the meantime, some of my systems seem to work a bit better without the gluten, so I have carried on. It has been harder going GF than it was "just" going low carb, and it can take several weeks for an individual to feel any benefit, so it isn't necessarily great to just give it a go for a few days/weeks. All of that said, I do feel well GF.

Clearly, it makes sense for you not to cut down on your gluten consumption before you've completed any Coeliac investigations.

I really hope you get to the cause of what ails you without too many more tests and so on. The investigations can be a bit of a drain in themselves.

 

[Totto]

I think "pernicious anemia" due to B12 deficiency results in a different size hemoglobin molecule (big) than iron deficiency anemia (very small) and they report the sizes in the CBC test. In addition B12 deficiency isn't really due to not taking in adequate B12 in the diet, it's due to lack of "intrinsic factor" which is normally produced by the body and allows B12 to be absorbed in the GI tract from foods. There is no intrinsic factor supplement to take for it, hence the need for intramuscular injections of B12. The OP said her Hgb came up from 9 to 13 with the addition of FeSO4 pills which wouldn't happen if she was B12 deficient. BTW I think that there is a diagnostic test for lack of intrinsic factor if my memory serves me.

How do you know the numbers refers to haemoglobin and not to ferritin?

 

[catapillar]

Coeliac disease is an autoimmune immune disease, it's just unlike other autoimmune diseases we know what causes the immune system to start attacking healthy tissue, we know what the trigger is: gluten. When a coeliac eats gluten, the immune system gets triggered and wants to kill off the gluten cells. But as gluten isn't actually an infection it can't achieve that, so instead the immune system attacks healthy tissue in the guts.

Because coeliac is an autoimmune disease, it can be tested for with just a blood test that looks for the presence of antibodies. To be accurate you need to be on a gluten containing diet. There is a potential for antibody tests to give false negatives/positives. The only definitive test for coeliac is a gut biopsy, which again requires you to be on a gluten diet for accurate results - https://celiac.org/celiac-disease/u...isease-2/diagnosing-celiac-disease/screening/

You can have non coeliac gluten sensitivity- listen to Benjamin Lebwohl on a recent episode of freakenomics discuss this - http://freakonomics.com/podcast/demonization-gluten/

 

[TheBigNewt]

How do you know the numbers refers to haemoglobin and not to ferritin?

Here a normal females's Hgb is 12-16g/dl. Ferritin normal is 200-500ng/dl. I just figured she was anemic with a Hgb of 9 and it came up to 13 with the iron.

 

[Totto]

Here a normal females's Hgb is 12-16g/dl. Ferritin normal is 200-500ng/dl. I just figured she was anemic with a Hgb of 9 and it came up to 13 with the iron.

How come her Dr was still worried then?

I think you should step back a bit and refrain from diagnosing fellow forum members. It is very much against forum rules to do so.

 

[TheBigNewt]

How come her Dr was still worried then?

I think you should step back a bit and refrain from diagnosing fellow forum members. It is very much against forum rules to do so.

The OP said her GP was now worried about celiac, not anemia. I didn't diagnose anyone FYI. I merely reported what a normal serum hemoglobin is. Maybe take a step back yourself.
Mods: Maybe move this thread somewhere else, it doesn't have anything to do with Type 1 DM.

 

[Totto]

OP said her GP thought the cause for her low iron might be coeliac disease as readings were still low, regardless of iron supplements.
I don't know the reference ranges at OPs lab and neither do you. At my lab normal Hb for women are 117-153, Ferritin 11-200 and iron 9-34.

We are not to give medical advice on the forum.

 

[TheBigNewt]

And I gave no medical advice whatsoever with regard to her therapy nor diagnosis of her problem, only information about several medical conditions and lab values. And if you read the OP's initial post she never said the doctor told her that her anemia reading was still low after the iron supplement. She said "My levels have only risen slightly from 9 to 13". To me that computes to a 44% increase in whatever was measured. Take a chill pill why don't you?

 

[Bluetit1802]

I don't know the reference ranges at OPs lab and neither do you. At my lab normal Hb for women are 117-153, Ferritin 11-200 and iron 9-34.

My lab reference ranges are
115 to 165 for HB
10 to 160 for Ferritin
7 to 30 for iron.

So they do differ from labs to labs, and often have different measurement units, too.

 

[Totto]

My lab reference ranges are
115 to 165 for HB
10 to 160 for Ferritin
7 to 30 for iron.

So they do differ from labs to labs, and often have different measurement units, too.

Those are similar to my lab, funny, isn't it? You would think someone with a Hb reading of 15 to be dead, wouldn't you?

 

[donnellysdogs]

Definintely eat gluten as you did before.

Toilet troubles can mean two things, too loose or too constipated.

Some iron meds can cause stomach problems. Ie I have a low colon and am not allowed to take any iron supplements, or liquids. My GP told me to eat brocolli everyday.

I also have pomi-t capsules x 2 everyday which are dried foods.. no chemical based vitamins.

For good flora in my small intestine I take a specific probiotic which was recommended to me by a research Professor.

By the addition of broccoli everyday this maintains my levels under target value but not needing tranfusions at hospital.

I cannot eat meat and few foods with added iron so in fact broccoli does me very, very well.

Did they also check your B12 and folate? If this is low it can also cause some symptoms you are describing.

Aches and pains and depression is nowadays falling in to a category labelled fibromyalgia but can be other reasons for this.

Personally I would not cut out gluten pre a diagnosis. You need to be eating it to be diagnosed...

If you do or dont get a diagnosis and you persevere with toilet problems and anaemia it may be good to be asked to be refererred to a gastroenterologist.

 

[Bluetit1802]

Those are similar to my lab, funny, isn't it? You would think someone with a Hb reading of 15 to be dead, wouldn't you?

Yes! It must be something other than her HB count. Maybe iron? RDW count?