Question About Celiac Test

[gabyy]

Hi, I am new to this site, and was greatful to find it. Here is my story.

My whole life I have had some rather vague abdominal symptoms, mainly near constant bloating and gas. I also have always had very large stools, to the point of clogging the plumbing. Occasionally the bloating would be bad enough to cause painful stomach cramps, but the feeling never lasted more than aa day. But never thought much about it, figured it was just me.

In September of 2005, I started a new job as an RN. I had to get a pre-employment physical which showed an elevated Thyroid Stimulating Hormone (TSH). I made an appointment with my doctor whoc did further thyroid blood work. These tests showed an extreme elevation in anti-thyroid antibody levels but normal T4 levels. (T4 is the actual amount of thyroid hormmone in your blood. TSH is actually a measure of the pituitary gland. In my case, my pituitary gland senses my thyroid is not performing at its peak and sends out extra hormone (TSH) to make it work better - Medication is usually not advised until the T4 is abnormal - so far by thyroid is responding the the TSH and kicking out enough t4). So basically my body is slowly attacking my thyroid gland, and I will eventaully require thyroid replacement. As for now, I am getting levels checked every 9 weeks, so far although the TSH is still high and the antibodies are high, the T4 is still normal and don't need any medicines.

I do not like the idea of taking meds if I can't help it...so I bagan searching the internet about autoimmune thyroid disease and any ways to prevent it. Throigh my research, I realized that peole with autoimmune thryoid disease have a higher incidence of celiac disease. I elaso found some web sites that stated that going on a gluten free diet can stop the body's attack on the thyroid. After reading more about Celiac disease, I thought realized that my vague stomach problems could be a sign of celiac. I have also had iron deficient anemia for a long as I can remember. I go on iron pills for months and it gets better, then I go off them (all prescribed by a doctor) and either my iron levels or ferritin will then become abnormal and will end up anemic., and put back on the iron.

Given all this, I decided to independently go gluten free and see if my thyroid levels got any better. I figured if they did, then I would then talk to my doctor about th3e Celiac disease. I was completely gluten free (well, I think I was- I keep finding new hidden sources of gluten!) for about three weeks. During those weeks, my gas and bloating improved by 90%. Then I got discouraged about the expense, the extra work, ect without having an actual diagnosis. So I began to put gluten back in my diet in small amounts, such as toast for breakfast then gluten free the rest of the day. So for basically all of March and April I have been eating gluten but in smaller amounts than normal (before all this, i ate bread/gluten probabaly with every meal and with snacks).

So, last week I went to the doctor for my normal thryoid levels. He had also checked on my anemeia status. My thyroid levels basically had not changed much, although the TSH did decrease a little, which is a good thing. Still don't need meds, and he will retest at the end of summer. However, without me even bringing up the Celiac, he said perhaps I should be tested for celiac b/c he is worried about my ferritin having gone down to 6 (with normal being about 12) even with iron supplementation. I did not tell him I had been gluten free for those weeks and then low gluten for the past two months (he is not the type of doctor that likes self diagnosis or internet diagnosis!). So now I am to get a celiac panel this month. I am loading up on gluten again, eating it with every meal, and will wait till the end of the month for the test.

I guess my question is this: will my gluten free weeks and low gluten diet for the past two months skew the results? especially since I am guessing if I do have the disease, it is probabaly "mild" since I have few actually symptoms, perhaps meaning I need a LOT of gluten to be positive. I really want an accurate blood test, since I know undiagnosed Celiac can cause lymphonas and for me, may cause further thyroid deterioration. Do you think I should tell my doctor I would like to wait on the test for a few months so I can be eating regular amounts of gluten? I have done a lot of research, and really can not finr the answers to theses questions. ANY help would be appreciated! THanks, Gabyy

[Ursa Major]

Hi Gabyy, and welcome to this board.

Personally, since you were actually gluten free for only a short time, and were still consuming a fair amount of gluten the past months, you should be fine for the test. Three weeks gluten free are not enough to heal the damage to your villi, if there is any.

Your symptoms could very well be celiac disease. And it appears that some people with severe damage still have only fairly mild symptoms. Some people have no gastro symptoms at all, but their villi are completely flat! In fact, sometimes anemia is the only obvious symptom.

Just because your stomach and bowel problems are relatively minor compared to some people with celiac disease, anemia and thyroid problems cannot be considered minor, and are just as valid as symptoms for considering celiac disease, as they are very common ones.

So, I would go ahead with the testing at the end of the month. And even if it turns out normal, you obviously are at least gluten intolerant, otherwise you wouldn't respond to being gluten free so positively. No matter what the testing shows (which isn't always accurate), I believe you need to be gluten free anyway.

Just my opinion, of course, I am not a health professional (which is good, because I don't trust them any farther than I can throw them ).

[tarnalberry]

It's a tricky situation... You were gluten-free for three weeks, and then had what? two slices of bread a day for two months? And then will be eating a lot of gluten every day for three or four weeks before the test? I'd say, at the least, you're in the grey area. If you can push the test back three or four weeks, I'd do it. But you have a chance of getting reliable results out of what you have as well.

[gabyy]

Thanks for your replies. I am still not completely sure what to do. The gas and bloating are back full force, so the thought of just getting the test over and done with in a few weeks seems the best option. I suppose either way I will end up if not gluten free at least low gluten, as my symptoms were still tolerabble when only eating small amounts. But then getting an a accurate diagnosis is also important for me, especially in terms of insurance. Ursula, I am a health preofessional, but I still don't trust them! I think actually working in a hospital as an RN has made me realize even more how little professionals know about diseases (including myslef!) I will pose what I decide and of course what the results show. Thanks again! Gabyy