I Never Thought I Could Have This... Could I?

[lalalucy]

Hi,

I have never even considered that I might have Celiac. I guess I really didn't know much about it. In the last week I made a home made batch of Seitan (made mostly of vital wheat gluten), and eating it for about 2 meals a day. Since then I have had some really weird stuff happen. I am wondering if these sypmtoms fall in line with what other people have experienced. A lot of these things I have experienced for a long time.

My symptoms:

- stomach pain

- acid reflux, GERD

- anxiety/depression

- tingling in feet and hands (buzzing in my feet mainly)

- short term memory issues

- diarrhea and voluminous bowel movements (gross i know!)

- I feel tired and foggy after eating pasta or cereal (always thought everyone had this, and it was from eating too many carbs)

- seborrheic dermatitis/psoriasis (it has spread ALL OVER in the last week, and used to be only on my scalp). I am SO ITCHY.

- bad joints (cartilage tears)

- recently developed lactose issues too

- Anemia

Does this sound in line with Celiac?

Also, who do people recommend seeing in order to get tested? GP, Nutritionist, Allergist, Gastro?

I hate to sound dumb, but I am really shocked and astounded that this even could be a possibility. I am very interested in hearing back from anyone.

thanks.

L

[psawyer]

Yes, your described symptoms are consistent with celiac disease, but there could be other causes.

Any doctor can order the blood tests to screen for celiac, but an endoscopy to look for damage to the villi would be done by a gastrointestinal (GI) specialist.

The key blood tests are tTG-IgA and total serum IgA. If the former is positive and the latter is normal, then it is very likely that celiac disease is present. If the total serum IgA is low, then the result of the tTG test is not reliable.

[one more mile]

What happened when you stopped eating it?

[lalalucy]

What happened when you stopped eating it?

I haven't. Today was the first day I started really thinking bout how crappy I feel. I had it for dinner and had a terrible stomach ache after and got to googling and ended up here. And started to see that I have a lot of these symptoms.

L

[maile]

I haven't. Today was the first day I started really thinking bout how crappy I feel. I had it for dinner and had a terrible stomach ache after and got to googling and ended up here. And started to see that I have a lot of these symptoms.

L

if you do decide to get tested for celiac please keep eating gluten, if you don't the tests could be inconclusive.

[Rebecca's mom]

At the same time that you have a blood test run to check for Celiac, you will want to have a skin biopsy done by a dermatologist WHO KNOWS HOW TO TEST FOR DERMATITIS HERPETIFORMIS. If the biopsy for DH comes back positive, it won't really matter what your blood tests say - a diagnosis of DH automatically means that you have celiac disease.

All of my bloodwork came back normal, but I carry the gene for celiac disease, and my skin rash started clearing up as soon as I started on a GFD. My rash didn't itch, so it was never tested. The fact that yours does itch would raise the suspicion of DH. And given your other symptoms, I would be very surprised if you DIDN'T test positive for celiac disease!

The good news is that if you start on a GFD, you should see results almost immediately. Just don't start on a GFD until AFTER you have these tests run! You should be able to tap into your local GIG chapter (go to Open Original Shared Link), and they can give you the names of doctors (especially dermatologists!) in your area who are known to be up-to-date on the latest celiac disease research. Best of luck, and let us know how it goes -