Does This Sound Like A Simple Gluten Intolerance Or Something More?

[Melina89]

Hello.

About a year ago I went on an elimination diet to suss out the cause of my IBS and happened to discovered my life-long chronic eczema is actually caused by wheat/gluten. It seems, however, that ever since I went on this diet my intolerance has gone really low. So I decided to speak to a doctor about it and now I'm on a 6-week gluten diet to prepare for a blood test for celiac disease (I was previously eating 90% gluten-free).

Naturally, this diet is killing me.

I'm itchy all the time. My eczema has moved all over my body (as opposed to just my legs which is where it usually appears) and it's actually not exactly eczema-like anymore. Sometimes it's almost like I have bubbles. Not only that, my digestive system is all messed up, and I'm in terrible pain. Even more concerning is the stabbing pain I used to think was associated with polycystic ovaries in my lower right abdomen has returned.

I was hoping someone could answer me this: Does this sound like a simple gluten intolerance or is this more like celiac disease?

Any help is appreciated

[tom]

Hi Melina,

Gluten Intolerance (or NCGI, non-celiac gluten intolerance) doesn't often seem to be all that simple around here, but I get that it's easy to use that adjective at first.

Re the eczema - you should look into whether it might really be DH https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/ , the celiac skin condition.

A DH diagnosis = celiac.

With so many symptoms from the gluten challenge, if I were you, I think I'd try to get the info to the Dr asap, & perhaps get the appt moved up. Particularly since you weren't really gluten-free before the challenge, going by the 90% gluten-free statement.

(As an aside, it seems a little puzzling that your symptoms were elim'd or so reduced while only 90% gluten-free. Maybe some weeks were 100%? )

To answer your main question, it certainly sounds like either celiac or a "non-simple" NCGI.

Yeah ...not *really* answering the question, but such is the state of celiac testing. There are patients w/ celiac who are currently undiagnosable, as weird as it sounds to say about a condition w/ such drastic symptoms for so many.

What it means to me is that celiac vs NCGI isn't much of a distinction.

How long have you been on the gluten challenge?

[nvsmom]

ugh, I feel for you. 6 weeks is a long time, I hope it's not too bad for you.

From what I've read NCGI people have pretty much the same symptoms as celiacs except they don't have the intestinal damage. Either way, it's not good.

Good luck!

[Melina89]

Hi Melina,

Gluten Intolerance (or NCGI, non-celiac gluten intolerance) doesn't often seem to be all that simple around here, but I get that it's easy to use that adjective at first.

Re the eczema - you should look into whether it might really be DH https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/ , the celiac skin condition.

A DH diagnosis = celiac.

With so many symptoms from the gluten challenge, if I were you, I think I'd try to get the info to the Dr asap, & perhaps get the appt moved up. Particularly since you weren't really gluten-free before the challenge, going by the 90% gluten-free statement.

(As an aside, it seems a little puzzling that your symptoms were elim'd or so reduced while only 90% gluten-free. Maybe some weeks were 100%? )

To answer your main question, it certainly sounds like either celiac or a "non-simple" NCGI.

Yeah ...not *really* answering the question, but such is the state of celiac testing. There are patients w/ celiac who are currently undiagnosable, as weird as it sounds to say about a condition w/ such drastic symptoms for so many.

What it means to me is that celiac vs NCGI isn't much of a distinction.

How long have you been on the gluten challenge?

Thanks for your response. I'm seeing my doctor again next week but I just needed some reassurance!

By "90% gluten-free" I meant that I might eat 1-2 serves of wheat per week, often less. Since the elimination diet I haven't completely eliminated gluten, I've just been trying to find a level I can tolerate. I've been doing that for about a year, but it seems I tolerate less and less each time. I've been on the gluten challenge for a little over a week. The itchiness I was expecting, but not feeling ill!

I think I will get a referral for a dermatologist so I can rule out the DH.

Thanks again.

[Melina89]

ugh, I feel for you. 6 weeks is a long time, I hope it's not too bad for you.

From what I've read NCGI people have pretty much the same symptoms as celiacs except they don't have the intestinal damage. Either way, it's not good.

Good luck!

Thanks! It's just so frustrating! I prefer gluten-free regardless but I'd really like to know I don't have celiac so I can enjoy the odd gluten product...