Food intolerance test

[sjm1308]

*apologies if this is in the wrong sub forum

So having been ill for approx 3 years with many issues (nausea/diarrhoea/constipation/anxiety to name a few) I was diagnosed last August with iron deficiency anemia. After some months on ferrous fumarate my levels had not improved so my GP sent me for a blood test for coeliacs disease. This came back negative but she tells me there is a 45% false negative rate (?). I'm now on waiting list to see gastroenterology for endoscopy but in my area (Northern Ireland) the wait is 12+ months. In the meantime my husband and I are on the waiting list for ivf and it is of utmost importance that I'm in the best health (my age goes against me here too 34). So I went to see a woman that does food intolerance testing from home. I'm not sure what type of test it is but it involved me holding metal prongs over little vials of food substances. The test showed I'm intolerant or sensitive to wheat (but not gluten) lactose and all sugars.

Since having the test I have done some research (probably did it back to front not doing the research first but am desperate lol) but there isn't a lot to back up these tests and the NHS from what I can tell do not endorse the test.

So my question is should I cut wheat sugar and lactose from my diet or should I wait for the NHS app with gastroenterology? I have to say in the last week abstaining from certain foods I do feel a little better but this could be psychological. Any help appreciated

 

[Mr_Pot]

The test sounds more like crystal ball gazing or reading tea leaves than anything scientific. If you are going to experiment leaving certain foods out of your diet do it one at a time for say 2 weeks or the result will be confusing.

 

[sjm1308]

Yes @Mr_Pot that sounds sensible. I kind of already thought that myself just looking some reassurance. Thing is when approaching ivf I'm just so desperate and clutching at straws! Thanks for the reply

 

[Brunneria]

I'm afraid that home intolerance testing gets to be pretty hard work. Although it can pay off hugely.

One thing to bear in mind is that excluding something for, say, 2 weeks may be nowhere near enough. Sad to say.

I realise that you have been told you are wheat intolerant, rather than gluten intolerant, but as an example I have seen several people say that they only became aware of the full benefits of excluding gluten from their diet until 4-6 months had passed.

In our household, Mr B was concerned that his psoriasis might be being triggered by gluten/wheat so he excluded it. But he also excluded dairy, since he was expecting to continue for months, and couldn't face a strict diet for the wheat, followed by a strict diet for the dairy. So he did both at once. Over 3 months later, he had seen no reduction in psoriasis so he re-introduced each food individually. Neither seemed to trigger a psoriasis flare up, so he has gone back to eating both. We are now testing out nuts.

Over the years I have seen various recommendations for allergy detecting by exclusion diet. It used to be 5 days was considered enough. Then 2 weeks. But some people now talk about a minimum of 30 days... I guess that I am suggesting that you do a fair bit of reading around and decide exactly how much effort you want to put into it, and how long you intend to do it for.

My own experience of cutting out gluten/grains was that I noticed no benefits for over 2 weeks, then saw a v slow improvement for another 4 weeks. At that point I decided to eat some bread and test what happened - which was nothing at all for 3 days, and just as I was cautiously celebrating, with a piece of toast, all my old symptoms came back with a vengeance.

 

[Lamont D]

*apologies if this is in the wrong sub forum

So having been ill for approx 3 years with many issues (nausea/diarrhoea/constipation/anxiety to name a few) I was diagnosed last August with iron deficiency anemia. After some months on ferrous fumarate my levels had not improved so my GP sent me for a blood test for coeliacs disease. This came back negative but she tells me there is a 45% false negative rate (?). I'm now on waiting list to see gastroenterology for endoscopy but in my area (Northern Ireland) the wait is 12+ months. In the meantime my husband and I are on the waiting list for ivf and it is of utmost importance that I'm in the best health (my age goes against me here too 34). So I went to see a woman that does food intolerance testing from home. I'm not sure what type of test it is but it involved me holding metal prongs over little vials of food substances. The test showed I'm intolerant or sensitive to wheat (but not gluten) lactose and all sugars.

Since having the test I have done some research (probably did it back to front not doing the research first but am desperate lol) but there isn't a lot to back up these tests and the NHS from what I can tell do not endorse the test.

So my question is should I cut wheat sugar and lactose from my diet or should I wait for the NHS app with gastroenterology? I have to say in the last week abstaining from certain foods I do feel a little better but this could be psychological. Any help appreciated

Hi, I am similar to you being that my tolerance levels to certain foods is so bad that I do have to avoid them.
I too, have wheat intolerance but not gluten, though if I can, I try and be careful how much gluten I actually have. I have dairy (lactose) intolerance, though, full fat yoghurt is ok but not milk!! (Seriously!)
What I have done in the past decade is filter out all those foods that I am intolerant to.
Why eat something that is not agreeable for you?
And even if some of the food you have a tolerance is not high, eat them responsibly, little and often.
Starting, I would stop the sugary foods, I would experiment and test and record how you react to the food you eat, increase your protein and non starchy vegetables. See which fats you can have, which is so important if your intolerance are like mine. I can only use, coconut oil or virgin olive oil or animal fats to cook. Anything like vegetable oils or cooking oils is bad for me.
Intolerance to food is not the end of eating such foods, it is about portion size, it is about how much you can tolerate, finding out what foods you can tolerate is more important than what you can't.

Best wishes

 

[sjm1308]

Thank you both so much for your helpful replies! Since posting this my GP has contacted me to say my inflammatory markers are high which could be a sign of bowel disease. Have to say it's going to be a long night of worry for me before I have my GP app tomo morning..

 

[lindijanice]

Hey sjm1308, I hope your Dr appt went well and he was able to give you some advice....your symptoms sound a good bit like IBS (Irritable Bowel Syndrome) and I would wonder if you would benefit from looking into the FODMAP way of eating - discovered by researchers at Monash University in Australia. Go to their site or others that give you specifics on foods that trigger those symptoms.....it is pretty easy to see in a short time if it works for you.....some find relief very quickly....it is an elimination diet but very sweeping in its exclusions, but worth it - I know as I eat that way and have great help in controlling the IBS and life is better!! Blessings/L

 

[sjm1308]

Hey sjm1308, I hope your Dr appt went well and he was able to give you some advice....your symptoms sound a good bit like IBS (Irritable Bowel Syndrome) and I would wonder if you would benefit from looking into the FODMAP way of eating - discovered by researchers at Monash University in Australia. Go to their site or others that give you specifics on foods that trigger those symptoms.....it is pretty easy to see in a short time if it works for you.....some find relief very quickly....it is an elimination diet but very sweeping in its exclusions, but worth it - I know as I eat that way and have great help in controlling the IBS and life is better!! Blessings/L

Thank you for this unfortunately they think it's crohn's or colitis. They won't know until I have the biopsies so I just hope I'm seen sooner rather than later.. Exhausted from the pain, the toilet issues and the lack of nutrients..

 

[lindijanice]

Hey sjm1308, been away a few days traveling back to Canada, so just catching up on the Forum. Please let us know when you get a definitive diagnosis as there may be other thoughts or suggestions people may have to help you along the way. My son has Chron's so I feel for you...Blessings/L

 

[miss miss]

wheat is not the daily bread of the bible. someone won a nobel prize about 70 years ago and now all wheat is this new variety which introduces new proteins into our diets

sometimes you can still buy what they call ancient grains

it is possible a lot of what passes for gluten intolerance could be caused by this new grain variety

i suggest you seek out the ancient grain and try it - i believe it is called kamut

besides that, just blindly try elimination diets for various things and see if that makes a difference

i hadso many allergy tests by specialists and no one could figure out what my problems were so just for the hell of it i tried the nightshade diet and now finally for the first time in decades I am free of a very nagging problem

good luck

 

[Kristin251]

I had that test. It was called muscle testing here and it did turn out to be accurate. I have IBS and cutting all grains and dairy and eating low carb helped me emmensly. Of course it’s not gone but it’s loads better. You have to look at how you feel after eating meals. Most carbs cause me bloating. Veggies as well. I eat them but in my h smaller portions than I used to or would like to.

My daughter and I have horrible digestion and require a limited diet to not be sympathetic.
I agree the FODMAPS diet helps by there are foods allowed that neither of us can eat.

Figuring out digestion and intolerances is exhausting as some don’t show up in digestion and some don’t show up until the next day.
Her roommate, as well as myself get very cranky, moody and sad the day after injecting wheat or dairy. None of us have celiac, just very gluten intolerant

 

[donnellysdogs]

I think its more important to see a consultant.
We paid privately 5 tears ago. I looked up all the gastroenterologists and studied their qualifications and specialities. I booked up and paid the then £160 fee (now about (235). Saw privately and he put me back thru NHS as urgent.. Had all tests within 4 weeks. And the results. Kept that gastro thru the NHS then..