I was told I have coeliac disease when they did an endoscopy for pancreatitis in 2006. The man doing the endoscopy said that there was some sore looking skin in my stomach that didn't look right whilst he was doing the endoscopy so he did a biopsy, from which they decided that I have coeliac disease, even though they also tested my blood TTG and it was negative and I never get pain when I eat food containing Gluten. They told me that eating gluten could make me very ill in the future and I really need to be on a GF diet, they had worried me with this so I went straight onto a GF diet, I bought a new toaster spent a fortune at the shops, I even bought a bread making machine so I make my own GF bread, I made sure all sauces, gravies etc were GF as well. The GF diet made me feel very ill, being sick, runs and bad indigestion, but I kept going for 6 weeks on the GF diet thinking that once my body got used to the changes the side effects would go but they didn't. Over the years I've had my blood TTG tested loads of times always negative and I've had my TPO tested many times always fine, last time the level was 10.
I have tried eating a GF diet many times over the years and every time I get ill with it. When I eat normal foods I am absolutely fine, my gastro specialist keeps insisting that I eat a GF diet based purely on one endoscopy 8 years ago he ignores the fact that it makes me feel ill. So my question to you guys is: As Coeliac disease is an auto immune disease shouldn't the TTG and the TPO always show as high/positive in the case of coeliac disease? Thanks for your help!
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thelady2003uk
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Thelady2003uk, ownership of one autoimmune disease can predispose you to others but it isn't a certainty that you'll develop others. Having coeliac disease doesn't mean you will have thyroid antibodies as your tests show.
Gluten is very damaging to coeliac patients. It's not unusual to get unpleasant 'withdrawal' symptoms for a few weeks after adopting G-F but they should resolve in a few weeks. If the symptoms persist on a G-F diet it may be that you have other food intolerances that need addressing.
Hi Clutter, Thanks a lot for your reply, I have also got a corn allergy and I do suffer with allergies to a lot of prescription and natural drugs, it's the fillers I'm allergic to as most of them contain derivatives of corn. Having said that I was diagnosed with subclinical hypothyroidism 6 years ago and have never been able to tolerate any type of levothyroxine (tablet and solution) Naturethyroid, T3 or armour whether it contained corn or not, so you are most likely right about the other allergies as well. I think I may be allergic to silicon dioxide, my GP paid for me to go and have a test about 3 years ago but when I got to the Immunology Clinic they said we have never heard of a silicon dioxide allergy so you haven't got one and they never did the test even though the NHS Trust had funded it for me. Very interesting about the side effects of gluten withdrawal subsiding after a few weeks, I will try a GF diet one more time, although I really have had an awful time on the three occasions that I have tried in the past. Last time I managed for 6 weeks but felt so ill I had to stop, I do wonder if I may be allergic to Xanthan gum which is in so many GF products. I think a trip to the Immunology Clinic is warranted again! Thanks a lot for your help, very kind of you to reply.
Can I suggest that you work with a nutritionist who will help you be on a GF free diet without relying on bough processed food. There are many risks from food when we are having allergy problems but I find they are greatly overcome if our food is simple, without added, unnecessary ingredients. I speak from experience. My GF food (new diet now) was flat bread made at home, a weeks worth can be stored in the fridge and fried or cooked on skillet when required -3 cups of any GF flours, I use buckwheat mixed with another, mix in any spices, seeds or herbs that you like and then use 2 cups of lukewarm water to mix. It will be a bit wet at first but will gradually soak up the excess water. A large table spoonful of this can be shaped into a flat bread.I also eat loads of veg, a little fruit and lots of good fats. Proteins are up to you but I'd stay away from deep fried or fatty meats and soya products, apart from fermented soya.
By making it simpler it is easier to find which foods effect you badly.
Are you eating ready made gluten free products? I seem to react to all of them, and it could be that.
Try just eating basic fruit/veg/meat/eggs/fish and no grain products at all. Its not easy at first, especially at breakfast time, but you get used to it.
Tests for coeliac rely on gluten reactions, so if you haven't eaten it for a while you would get a negative result. Even the endoscopy will show a healed gut.
Hi Ruthi, Thanks for your reply, I have been eating normal bread for ages, years in fact. I tried the GF diet three times over a two year period (2006 - 2008) after I was diagnosed by the biopsy, but since that time I have not tried again and my TTG blood tests are still coming back negative as they ALWAYS have. I eat warburtons white bread, white bread rolls, madeira cake all sorts of everyday foods with gluten in and I never get stomach pain, as soon as I go GF that's when all my problems start. There is no family history of coeliac disease and I have been wondering for ages if maybe they interpreted the biopsy incorrectly, I thought I may have leaky gut or too much/little stomach acid. I have been diagnosed with a small hiatus hernia so I wonder if that's what's confusing everything. The head scratching goes on! Thanks for your reply and Take Care.
Sorry forgot to say, I have tried ready made GF products, but I also tried making my own GF bread and cakes both had the same outcome, I felt ill. I have had problems with reactions to foods since I was a child and after a long period of trial and error I eventually worked out what I could eat and what I couldn't. I have loads of allergies so I think my problems are more allergy related than coeliac disease. I have a corn allergy that makes life difficult but I have learnt to live with that too so I live on what you would call normal English food, meat and two veg type foods, plus loads of salads which I love, vegetables, fish but no fruit as it gives me a wicked stomach ache, hence me wondering if i may have a problem with stomach acid. I am ok with lactose but I choose to use goats milk/butter/cheese as I prefer the taste of this to cows products and this has never caused me any adverse reactions.
OK, so I was thinking more giving up all grains, which would cut out all those gluten free substitutes, But I agree with you that one endoscopy with no supporting evidence is not a good enough reason to say you are coeliac. There is a group of proteins which only occur in grains called gliadins, of which gluten is only one. The non-gluten gliadins don't cause such obvious symptoms, but are all pretty hard on the human body.
The problem is that there is this thing called 'silent' coeliac disease, which causes symptoms similar to hypothyroid symptoms, fatigue, brain fog etc, but no obvious GE symptoms. If you had this then it would be worth avoiding gluten to prevent further damage. The test is usually a group of blood tests. I would think it reasonable to ask to be retested, or even to go private given the high cost of a gf diet.
I have to say, white flour products are pretty bankrupt nutritionally. They have few nutrients, but loads of additives and empty calories, and personally I regard them as superfluous. I will admit to the odd croissant when in France, but that is it.
Can you tell me which blood tests you are referring to please, I may have had them already and if so I could let you have the results. I agree with you about the white bread not being exactly healthy for us but I cannot tolerate brown bread except for weight watchers own, which I don't mind but it's not very good toasted, but brown rolls are a no go. I find it interesting what you say about the gliadins, I have thought about these fleetingly before but now you have brought it up I feel it warrants further investigation, so thanks a lot for this very interesting!
I haven't got a record of my tests, but the Coeliac UK site says
The most accurate blood tests for coeliac disease are:
Tissue transglutaminase antibody (shortened to 'tTGA')
Endomysial antibody (shortened to 'EMA')
I think if they come/came back negative it would be quite difficult to argue that you have coeliac disease. But given that gluten is bad for humans its probably only the level of diligence that you have to apply to excluding gluten that changes. Gluten certainly doesn't seem to do thyroid patients, or those with compromised adrenals any good at all.
A good book about gliadins is David Perlmutter's 'Grain Brain', and look too at the Wheat Belly site.
You really don't need bread in your diet, in any form. I eat my pate and cheese with crispy things, or if I am craving carbs a baked spud/sweet potato/parsnip or what have you.
Thanks for the reply. I don't eat much bread either I only have it occasionally, as I know it's not good for humans and I can't eat GF I just stay away from bread as much as possible. It's my TTG that has always come back negative, but the EMA test is a new one on me, I will be asking about this. Thanks again!
Thanks Clutter very interesting. On the biopsy they did on me they took 6 samples which is why they concluded coeliac disease. But even though I have had my TTG tested at least 12 times since the biopsy in 2006 and I have eaten more gluten than just 2 slices of bread a day, eg, cakes, gravies, sauces etc my TTG has always come back negative. My niece had stomach pain etc they tested her for coeliac disease, negative and as far as I am aware there is nobody in our family that has this. I am going to ask for an EMA test as suggested by Ruthi, the results will be very interesting I think!
thelady, before going back to GF diet, make the two following tests:
- Ema Iga
- IgG gliadin antibodies
If one of them comes positive, you are almost sure for CD and you will have to go on with GF diet. Have you ever thought of doing also a food intolerance test. It may tell you about the food you must avoid and which you sometimes find in GF food, like soya, rice, milk, corn...
Hi akimbohr, Thanks for your reply, I just typed a long reply out to you clicked on Submit reply and then Health unlocked lost the message. Sorry but I don't feel up to typing it again so a shortened version: I have had 12 - TTG tests since 2006 all negative, 3 - IGA tests - al normal. The only one I haven't had is EMA I will ask GP about this. I was proven to have an allergy to corn pollen at the hospital which makes it difficult for me to tolerate medication, but I can eat corn on the cob any foods containing corn no problem. I think I'm just weird, I cannot tolerate salted peanuts out of a packet but I can eat bucket loads (not literally) of Dry Roasted peanuts. I think it's all to do with the way food is processed these days, the amount of chemicals they put into food and enhancers it's no wonder allergies are on the up. Thanks for your help. Take Care.
Hi Thelady, I was just wondering whether the reason you have a bad reaction to going gluten free is because you have positive IgA or IgG for gluteomorphin + Prodynorphin IgA or IgG. This would mean that you'd suffer horrible withdrawal symptoms when stopping the gluten. Here's a link:
It is possible to give you something to help you through this. It is possible to test negative for gluten intolerance/coeliac with the standard medical tests because they only test one element of gluten.
Hi Collie, Very interesting link thanks a lot for sending it to me. I will have a good read and get back to you. Every time I've had IGA and IGG tested it has always been negative, all blood tests are always negative, it was only that they did an endoscopy and biopsy whilst I was in hospital with pancreatitis that they decided I must be coeliac. The only problem I have with the theory of withdrawal symptoms is that I have gone onto a GF diet 3 times and each time I have stuck rigidly to it for at least a month, usually 6 weeks and I have had to go back onto normal bread because I couldn't stand the pain and the running to the loo all the time. But as I said I will have a good read of the article. Many thanks, very kind of you to help. Take Care Sharon
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