Have Been Told I Dont Have Coeliac

[smile]

I finally got some feedback regarding my raised IgA (blood tests results). My gp had spoken to a consulant I saw months back and they said I didn't have coeliac and they were pretty sure. They believed I either had IBS,a mild case of malabsorption. It was suggested I take something called Colestyramine. I then told them that since being gluten free Ive had normal bowel movements. No problem on that front. So dont have to take that. A last resort is to try a lactose free diet. Now I dont believe I have IBS. My bowel movements are normal eg formed and once a day. I dont have stomach cramps nor have I ever been constipated. I explained that Im still having weight loss and feeling sick. I was told if it continues to go back and see them again. My parents were like "how much weight do you need to lose to get help". Im almost down to 6st 11. Some of my size 8 (uk) clothes are falling off me, if I were to not wear jumpers/hooded tops, people would actually think I dont eat properly. Sometimes I feel paranoid that people think I have an eating disorder. Does anyone know of anything that could be going on. I spoke with my GP about previous history of overdoses on medication and asked if they could contribute to my health now and they said they were pretty sure it wouldnt have caused any damage. I was also told I can eat whatever I want eg gluten containing foods.

[mushroom]

Sometimes you have to get off the medical motorway and take a byway The motorway keeps you travelling on a known path with no deviations which leads to a known destination; the byway allows you to explore other small towns along the way and consider the opportunity of visiting other places.

It is MHO that you need to stop eating gluten regardless of the tests and the good doctors' opinions. It is your body and you are in control of it. The testing is just not sufficiently accurate to abide by it 100%. Even in cases of quite severe damage to the small intestine it is possible to have an equivocal or "normal" blood result. Even in cases of celiac disease with other than GI symptoms it is possible to have a "normal" endoscopy with biopsy. The false negative rate is about 20%. The ultimate test of whether or not gluten is a problem for you is to stop eating it. I know you have had gluten free trials before. I believe that if you were to give it a good, three-month trial where you were totally strict in eliminating all sources of gluten - and there are oodles of threads on here on how to do this - that you would feel much better and stop losing the weight. You should of course also eliminate lactose because you have not had an endoscopy and we do not know if you have damaged villi, but let's assume you do and that you are not making much lactase. You would also need to find a way to convince your doctor to check you for vitamin and mineral deficiencies and supplement these in your diet. If you have any of the standard deficiencies Vits. D, B12, folic acid, A, E, K, and minerals potassium, magnesium, calcium, zinc, these could all have severe impacts on your health. You will probably need to have your thyroid tested too to be sure. If after all this you continue to lose weight then your doctors should do a thorough investigation as to why.

Now this is just my opinion, but to me you look like a classic (semi-)silent celiac. The fact that you don't have raging GI or neurological issues means nothing. My sister's major symptom was unexplained weight loss.

Good luck to you on your byway travels.

[WheatChef]

You can safely ignore the advice of any doctor who uses the term "IBS" without immediately following it up with "doesn't exist". If going gluten-free has produced a significant decrease in severity of symptoms then who cares what faulty tests show?

[Kay DH]

It would be good for you to keep a food diary, both to track any reactions that you might have and to see if you are getting enough calories. Your doctor should have run a poop test to determine if there are any pathogens in your GI tract that are influencing absorption, and to check malabsorption. Make sure you are not getting cc'd from all the places that gluten hides, such as in most prepared foods. "IBS" is a name that doctor's assign to GI problems that are not diagnosed. We have a friend that has had IBS for years, and he just went gluten-free for other health reasons. His IBS disappeared. The final test is how you feel gluten-free. Even if you don't have celiac, you could have sub-clinical celiac or gluten sensitivity. There is also the possibility of other food sensitivities.

[cassP]

i dont know STONES... and is a size 8 in the UK the same as in the US?? are you sickly thin?? it might be possible that you are dropping weight now because you're off the gluten..??? the weight comes off of me when i go gluten free- and if i am doing LOW to NO carb- it comes off even faster..

idk, as long as you're still healthy & have enough fat percentage to keep your organs healthy- and as long as your bowels are normalizing- i wouldnt worry .. but keep up with the doctor of course with any concerns.

[mushroom]

A stone weighs 14lbs (well, not every stone, of course but the ones on the scale). So she weighs 95 lbs.

[smile]

Thanks for your replies. I guess my main concerns are the feeling sick and losing weight. Ive decided that Im going stay gluten free, my dietician had told me whether Im diagnosed or not I should stay well away from gluten. Another thing that has seemed to have disappeared slowly over the last three weeks is a rash I would get on my legs. It just would always be there, however it has totally been gone for at least a week now and my legs dont itch as much. I am also going to go lactose free, from what I remember when I have eaten things like cheese pizza or jacket potatoes with cheese I tend to not feel great afterwards. Funnily enough I had a gluten free cheese pizza on saturday, both sunday and monday I felt sick, had slight headache etc. Im shocked that even the specialist (saying that I never actually met them because they were always off sick) hasnt even considered that I could be coeliac or have non coeliac gluten intolerance, plus no mention has been made by them about my rasied IgA. It seems that it has no importance. I will just have to follow eating what makes me feel better and not hang around for a specialist to confirm what I am doing is right.

[cassP]

plus no mention has been made by them about my rasied IgA. It seems that it has no importance. I will just have to follow eating what makes me feel better and not hang around for a specialist to confirm what I am doing is right.

what raised Iga?? is it your Total Iga Serum??? or is it Tissue Transglutamase Iga? or Antigliadin Iga??

we could probably explain more to you- the doctors seem to only give us a millisecond of their time...

and you're a size 8??? but only @ 95lbs????? im worried about you- 95 is too thin.. i hope you can heal soon and get to a weight that is healthy & makes u happy try to eat some rice with every meal... and make sure you're getting enough healthy fats, proteins, & veggies..

keep us posted- and share your Iga item- im interested...

[smile]

Thanks for your reply. The doctors have never been concerned with the weight to be honest. I was told by a registerar that I have always been light when he has only seen me twice and a few year back I was 36lbs heavier and when I was at college I was averaging around 122lbs, for me that is my normal healthy weight.

Im going to see if my diet changes make anymore difference in say a month. In my daily diet I get fruit/veg/yoghurt/nuts/gluten free bread/meats/poatoes or rice and chocolate soya milk.

I was never told what IgA it was. All I was told was that my blood test showed normal for one idicator of coeliac, but the other one was slightly raised (the IgA). I was told that this suggest I should see a specialist. However my doctor spoke to the specialist and they said I definately didnt have coeliac. I wont be seeing my doctor for a while for any reason so wouldnt be able to find out what IgA it was. They are not very fourth coming in giving details. This raised IgA has been the same for the past year, Im assuming that means Im producing antibodies for some reason.

Ive also noticed that since being gluten free that Im losing less hair. Usually when I wash it you could pick up a clump of it, now there is about 3 hairs, which is pretty normal. Im glad to be seeing some changes.

Im just a bit worried because coming up shortly I have to go somewhere (they are providing lunch)and I know that if I dont eat anything people are going to assume I have an eating problem (even more so with how thin I look), mental health. It would be easier to say I have coeliac than to say I choose not to it gluten. Im afraid of being judge as choosing to not eat certain foods. I know what some of the people Im going to be around are like and they are professionals. Any idea how I can deal with the situation. Im not going to eat there anyway, Im going to eat before going. I just dont want to be judged and looked at as if I have a problem when I dont.

[ravenwoodglass]

Ive also noticed that since being gluten free that Im losing less hair. Usually when I wash it you could pick up a clump of it, now there is about 3 hairs, which is pretty normal. Im glad to be seeing some changes.

Im just a bit worried because coming up shortly I have to go somewhere (they are providing lunch)and I know that if I dont eat anything people are going to assume I have an eating problem (even more so with how thin I look), mental health. It would be easier to say I have coeliac than to say I choose not to it gluten. Im afraid of being judge as choosing to not eat certain foods. I know what some of the people Im going to be around are like and they are professionals. Any idea how I can deal with the situation. Im not going to eat there anyway, Im going to eat before going. I just dont want to be judged and looked at as if I have a problem when I dont.

It sounds like the diet is helping you. Good to hear. About that lunch, the people are not going to have access to your medical records. If it is easier to just say you are celiac then do so. Or you could just say you have food allergies and then change the subject. Try not to worry about what others think your health is more important.

[Jestgar]

and you're a size 8??? but only @ 95lbs?????

An 8 UK is a 6 US Open Original Shared Link

[smile]

sorry to be writing another post.

Im just so fed up. For a good number of years Ive not been well eg depression. Now Ive turned things around, but physically Im falling apart. I just dont know what to do anymore.

Ive been gluten free almost 4 weeks now and Ive been lactose free for about 4-5 days. Now this last 3/4 days Ive been having slight headaches. Then today I had a heavy head again, it went away after about 15 mins, however I then had about 4 trips to the bathroom for bowel movements. I also had lost of noises from my stomach and wind. I cant think of anything that Ive eaten that can have caused this.

Then about an hour later I noticed that one of my fingers was swollen, there is no redness or itching. I dont think Ive been biten by anything.

Ive seen so many gps about feeling physically unwell in the last year. I just want to be physically well now to make everything more complete.

[Marz]

You mentioned gluten-free bread and soya - you might want to leave those out for a few days and see if it makes a difference. Many gluten-intolerants/celiacs are also intolerant to soya. Gluten-free bread may have trace amounts of gluten cc, or you may be intolerant to some grains while you're still healing. It's always a good idea to keep a food diary with your symptoms and see if you can spot any patterns.

Also, 4 weeks is a short amount of time - I've been gluten free for a few months and I'm still struggling to figure out what is safe for me to eat, accidentally glutening myself etc. Every time I accidentally eat a trace amount of gluten, all the symptoms start up again. Although overall I can see I'm much better than when I started.

Might be worth it to think back to how ill you were before you started gluten free - if you can see improvement then you're on the right direction, you just need to be patient with your body's healing. If you can't see improvement then either you're still getting some trace cc or you're intolerant to some other food as well? For example, egg, chicken, olives, goat cheese - all these items give me severe d a day or so later. I would never have picked this up without a food diary, and avoiding them helps me immensely.

Hope you feel better soon!

[reddgreen]

I just found this blog today, and also just found coeliac/gluten allergy symptoms described almost exactly what Ive been dealing with for years, hoping to get tested in the next couple of weeks.

Many of these tests have a very high false negative rate, so a doctor might not interpret a negative result correctly. Try to find a site, or ask your doctor (or get a new doctor!!!) what the false negative rate is for the test as well as the accuracy of the test (the probability that the test does signal positive if the disease is present). I have a background in math and statistics, so ive seen the math behind some medical tests.

Best luck to you, and I agree with the advice above: just because the test was negative doesn't mean you aren't coeliac or gluten intolerant. If eliminating gluten from your diet gets rid of the symptoms, then power to you!