Confused About Celiac Disease

[Lise]

Hi,

I'm hoping someone here will be able to help me - there seems to be a lot of knowledgeable people here!! Essentially, I'm not sure if I have Celiac. I think I'll have to go through my history a little bit for this to make sense...

1. Age 11 -12: I had frequent upset stomachs. The Doctor thought I may have IBS, but as I stopped feeling sick after some time it wasn't pursued.

2. Age 17: Occasional upset stomachs accompanied with severe cramps. I put this down to Grade 12 stress, and as it went away after Grade 12 I didn't pursue it.

3. Age 21: Unexplained iron deficiency my Doctor thought may have been caused by slient Celiac disease. Blood tests were equivocal because I am IGA deficient, and an endoscopy came back negative. However, the gastroenterologist who did the endoscopy still thought I was "a vey good candiate for having Celiacs" and thought I might benefit from a gluten-restricted diet. By then, my iron deficiency was improving so I didn't try the diet.

4: Today (age 22): For the past three weeks, I've been experiencing bloating, painful and ongoing stomach cramps, headaches (though I don't think that's a symptom of Celiac disease) and sometimes also upset stomachs.

I am planning to go back to my Doctor if this continues and pursue the idea of a restricted diet, but I don't think she can tell me much more. So my question here is basically, do you think I have Celiac disease? I'm a little confused as to how I could have it but only be affected by it at certain times - I have always eaten gluten, so why would it make me ill at some times and not at others?

Also, does anyone know generally what a restricted-gluten (as opposed to gluten-free) diet would consist of - which parts and how much would I restrict?

Thanks for your help - this forum is really useful!

[Ursa Major]

Unfortunately, your doctor isn't very informed about celiac disease. A gluten restricted diet is useless if you actually have celiac disease, it will keep you just as ill. If you want to know if you feel better without gluten, you need to go to a 100% gluten-free diet. In this case, it is all or nothing. Either you go completely gluten-free or you don't need to bother.

You definitely sound like you may have celiac disease. Only in the end stages will you be sick continuously. In the meantime symptoms will often come and go. And actually, yes, celiac disease CAN and will cause headaches.

[Lise]

Unfortunately, your doctor isn't very informed about celiac disease. A gluten restricted diet is useless if you actually have celiac disease, it will keep you just as ill. If you want to know if you feel better without gluten, you need to go to a 100% gluten-free diet. In this case, it is all or nothing. Either you go completely gluten-free or you don't need to bother.

You definitely sound like you may have celiac disease. Only in the end stages will you be sick continuously. In the meantime symptoms will often come and go. And actually, yes, celiac disease CAN and will cause headaches.

Thanks for your reply. I think the Doctor recommended the restricted diet because, according to his tests, I didn't actually have celiac disease. But reading this forum, I know now those tests aren't all that accurate and maybe I do have it. I don't want to be tested for it by having another biopsy (yuk!) but maybe I can try the blood test again - is a person always IGA deficient? I'm going to look into trying the diet.

Given that headaches are a symptom, I've been having problems for months. I just put it down to reading too many law textbooks.

Thanks again

[Ursa Major]

Thanks for your reply. I think the Doctor recommended the restricted diet because, according to his tests, I didn't actually have celiac disease. But reading this forum, I know now those tests aren't all that accurate and maybe I do have it. I don't want to be tested for it by having another biopsy (yuk!) but maybe I can try the blood test again - is a person always IGA deficient? I'm going to look into trying the diet.

Given that headaches are a symptom, I've been having problems for months. I just put it down to reading too many law textbooks.

Thanks again

Yes, I believe you will always be IgA deficient, so you need to do a different blood test (I don't remember which, I hope somebody else will tell you).

[Lise]

Yes, I believe you will always be IgA deficient, so you need to do a different blood test (I don't remember which, I hope somebody else will tell you).

Maybe that's IgG testing... that was mentioned in a couple of other topics. I wonder why my Doctor didn't test for that or, if she did, why she didn't mention it with the IgA testing.

Is anyone able to confirm that it is IgG testing? That could be something to pursue...

[ShayFL]

Yes, you need the IgG testing for antigliaden and TtG. I had those done as part of a complete celiac panel.

[cruelshoes]

Open Original Shared Link

There is an IgG version of both the Anti-tissue Transglutaminase Antibody (tTG), IgA and Anti-endomysial (EMA). The Antigliadin IgG has largely fallen out of favor because it is not specific to celiac. Many other things besides celiac cause the AGA IgG to be elevated, so it is less of a helpful tool for diagnosis. It is still included in the full celiac panel because looking at it in combination with the AGA IgA is helpful tool for diagnosis. But on its own, it is not a good diagnostic tool for celiac. If you are IgA deficient, the IgG version of the antigliadin test will not help much.

[MyMississippi]

You've already had an endo and some testing.------- And one doctor thought you were a good candidate for celiac disease----

Why not just go totally strictly gluten free and see if your symptoms resolve????

[Lise]

You've already had an endo and some testing.------- And one doctor thought you were a good candidate for celiac disease----

Why not just go totally strictly gluten free and see if your symptoms resolve????

I am thinking that is about the only option left... and probably a sensible one to take at this stage. I'd like to have a diagnosis, but it seems like a lot of people can't get one of those!!

The only thing is, I'm not sure I'll know if it's working. I can go a few weeks, maybe even months, with only some mild headaches and of course they could be caused by other things like bad sleeping habits or too much study. I'm not sure I'll know if the diet is making me feel better or if I'm just not experiencing any symptoms at the time... unless going gluten free will make me realise that how I feel on good days is not really that good after all! Has anyone else had this problem?

[Lise]

You've already had an endo and some testing.------- And one doctor thought you were a good candidate for celiac disease----

Why not just go totally strictly gluten free and see if your symptoms resolve????

I am thinking that is about the only option left... and probably a sensible one to take at this stage. I'd like to have a diagnosis, but it seems like a lot of people can't get one of those!!

The only thing is, I'm not sure I'll know if it's working. I can go a few weeks, maybe even months, with only some mild headaches and of course they could be caused by other things like bad sleeping habits or too much study. I'm not sure I'll know if the diet is making me feel better or if I'm just not experiencing any symptoms at the time... unless going gluten free will make me realise that how I feel on good days is not really that good after all! Has anyone else had this problem?