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New To Board. Do I Have Celiac? Help Would Be Greatly Appreicated

JT82

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JT82 Newbie
JT82
Posted

Hello,

 

I am trying to figure out if I have celiac disease and going in circles. My doctor isn't clear on it as well. I want to travel to other countries but scared to because I don't know what I will eat when there. I have had several tests (see below) but not the biopsy of small intestine. Based on the info does it sound like I have celiac disease if you were to make an educated guess?

Your answers will not change my attempt to find the answers via doctors but I am just curious if anyone has any input. The problem is I should have done the biopsy right away when I ate gluten. Now that I have been gluten free for 6 months they say I need to start eating gluten to have the biopsy. I don't know what to do.

 

Celiac Blood test

IGA - Negative

IGG - Positive - 23.6 on a scale of 1-9 (this was the only test that my doctor was worried about and put celiac in my head)

Gliadin peptide - Negative

 

Gene test

dq2 - negative

dq8 positive - 1 gene (test said I have 1-89 chance of celiac as compared to 1-100 for normal population)

 

Allergy blood test (have a lot of food allergies for some reason)

Gluten - YES 

Diary - YES

Eggs - YES

 

Blood test general health

Everything is pretty good and in range except I have testosterone levels a little low for my age. Going gluten free hasn't helped much with this.

 

 

Symptoms when I ate gluten in the past

Never really had major symptoms from eating gluten. I noticed my nose would get stuffy like other foods I was allergic to. Also it made my thinking foggy. But nothing major and no stomach aches. I had diarrhea often when I ate gluten but overall I was eating a lot of stuff I was allergic to. I would say diarrhea several times a week. I had a couple skin rashes last 3 years but the skin doctor didn't say it was dermetitis hep. He didn't seem to know what it was. My stool was very light and watery in the past and never really solid. I never had stomach aches from eating gluten and could eat a whole pizza without getting a stomach ache. 

 

Symptoms going gluten free.

When I went gluten free it was hard physically/emotionally. I didn't have major symptoms just felt pretty bad and was depressed. Now that I am gluten free I don't have diarrhea ever but my stool is still pretty watery but slightly darker. Still have allergies. The only major improvement I notice is my thinking is way better. My digestion still isn't too great. Had a few colonics that helped a little but now back to normal. My vitamin d levels are in range but could be a little higher. My vitamin b12 levels were tested and actually really high.

 

I am wondering if I should be watching every little thing that I eat and not traveling because of my symptoms/tests. It is really messing up my life. I just want to know if I have it or not. I can get use to either one but I can't get used to not knowing.

 

thanks for your help

 

 

 

 

 

 

 

 

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cyclinglady Grand Master
cyclinglady
Posted

Well, the next step is a biopsy since you had a positive result, but if you are not up for a gluten challenge (to do the endoscopy) then you can stay off gluten (must be strict) to see of symptoms improve. Six months is not long enough to see improvement for many people with celiac disease. Read our Newbie section under "Coping" for tips especially about cross contamination. You are in a tough spot and have my sympathy.

It is possible to travel internationally and remain on gluten free diet. Lots of us have done it (or are doing it now!). Print of celiac disease language cards as they are helpful and plan!

Oh, there is no known allergy to gluten (wheat, yes). . Not sure how accurate those allergy tests you took were, but they might be helpful in identifying intolerances, so I would continue to avoid eggs and dairy too. Keep a food journal.

I wish you well.

JT82 Newbie
JT82
Posted
  • Author

Well, the next step is a biopsy since you had a positive result, but if you are not up for a gluten challenge (to do the endoscopy) then you can stay off gluten (must be strict) to see of symptoms improve. Six months is not long enough to see improvement for many people with celiac disease. Read our Newbie section under "Coping" for tips especially about cross contamination. You are in a tough spot and have my sympathy.

It is possible to travel internationally and remain on gluten free diet. Lots of us have done it (or are doing it now!). Print of celiac disease language cards as they are helpful and plan!

Oh, there is no known allergy to gluten (wheat, yes). . Not sure how accurate those allergy tests you took were, but they might be helpful in identifying intolerances, so I would continue to avoid eggs and dairy too. Keep a food journal.

I wish you well.

 

Thank you for your help. Is the positive IGG test enough to diagnose for celiac? Because I feel like that is what is happening. That is really the only thing that points to celiac besides my gluten allergy. What else could cause high IGG and is it that high?

cyclinglady Grand Master
cyclinglady
Posted

Like I said, the next step is going to a Gastroentrologist for a consult and possible biopsy. I, myself had only one positive out of the complete celiac panel, yet I had moderate to severe damage per my intestinal biopsies. Again, there is no such thing as a gluten allergy. There is a wheat allergy. Celiac disease is an autoimmune response to gluten from wheat, rye and barley that causes the body to attack the intestinal tract. I have celiac disease but I do not have a wheat allergy.

I would ask for a GI consult.

I can not comment on your "high" result since I am not sure which celiac test you took, but it is obviously out of range.

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