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Should I Get A Second Opinion?


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3 replies to this topic

#1 nekome

 
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Posted 06 January 2013 - 05:10 PM

Hi everyone, I've been reading these forums for some time now and after going through a stressful year of trying to determine if I have celiac or not. A little bit about myself-- I've had eczema (in the form of what looks like bubbles under the skin that are extremely itchy on hands and feet typically), randomly swelling joints (hands, feet, knees and lasts for days making it quite painful to walk/move around), and hormonal imbalances which caused irregular periods for as long as I can remember. Since last year, I've been experiencing constipation, diarrhea, feeling really fatigued (regardless of sleep and trying to eat a nutrient rich diet along with taking multi vitamins), moodiness (almost as if it were depression) on a nearly daily basis plus the eczema suddenly started to spread over other parts of my body and the joint swelling seemed more frequent. Top that with my hair rapidly thinning no matter what I tried, and needless to say I was extremely worried. I was exercising regularly, eating healthily (mostly eating lean protein, lots of vegetables and fruits, and whole grains), and drinking 3 liters of water a day yet the symptoms were still there.

I went ahead and ordered an Entero Lab test in August and here are the results:

Gluten/Antigenic Food Sensitivity Stool/Gene Panel
Fecal Anti-gliadin IgA 185 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 46 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 19 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 19 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)


As of the middle of August when I got the results, I completely stopped eating gluten and acted as if I had Celiac. I found that my symptoms improved but I still wanted to get an official diagnosis not just for myself but for my family.

I went to my PCP in November and he ran a blood test panel telling me that I had no antibodies to gluten, only very mildly so for dairy and eggs. He suggested I stay off dairy and eggs for a week and see if my condition improved. But in terms of any kind of gluten intolerance or Celiac, he said I didn't have either. So, I started eating gluten again for that week. Towards the end of it, I woke up with my body covered in very itchy rashes that lasted the entire weekend. (This on top of my usual symptoms) I spoke to my PCP and asked him to look at the Entero results just in case and then he referred me to a GI that he said specialized in Celiac. After meeting with the GI, he told me that about a week before the biopsy, I should start eating gluten so I basically tried to OD on it for that week.

I finally had a biopsy done in early December after being gluten free from the middle of August to November, then on gluten for a week after the initial blood test, then back off gluten until the week before the biopsy, and since the biopsy I'm gluten free again.

The GI got back to me and said that my small intestine "looks fine, very good in fact" and that I have intestinal metaplasia-- there's just inflammation in my stomach (didn't say to what degree). Confusing since I don't eat spicy foods, I barely drink alcohol, no coffee (though I do drink tea that has caffeine about 2 times a week), and don't really eat too much acidic foods.Though he did say that I do have a gluten sensitivity as reported by the Entero Lab results and I don't necessarily have to avoid gluten but if it makes me feel better, then I should stay off it.

I'm thinking of getting a second opinion at the Celiac Disease Center in NYC. Do you think given my case there may have been a possibility that I got false negatives? I did eat gluten those two weeks and experienced symptoms but apparently there was no damage? Should I try to gluten challenge myself for longer and then try to get a diagnosis again?

Thanks for reading, I know it was pretty lengthy. This whole experience has just been very stressful and I don't know anyone that I can speak to that understands gluten intolerance or Celiac disease.
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#2 mushroom

 
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Posted 06 January 2013 - 06:09 PM

Welcome to the board, nekome.

Your question is an innocent enough question, but it opens a Pandora's Box of answers. To be honest, there is absolutely no agreement on how long is long enough to be eating gluten once you go gluten free. While most people do start reacting to gluten immediately upon its reintroduction, it takes a while, which varies by indvidual, to build up in the bloodstream sufficient to trigger the positive testing levels. Celiac centers cannot agree, doctors cannot agree, forum members cannot agree. We have had many discussions on this subject here on the board.

The recommendatiion used to be 6-8 weeks, three to four slices of bread a day, or equivalent. You will see and hear recommendations anywhere from one or two weeks all the way to three months, from half a wheat cracker a day to the aforementioned 4 slices of bread. The beat answer I know is that you need to eat enough for long enough to give yourself the best chance of an accurate result. Weasel words, I know, but really that's where it's at.

The only testing you have had done by doctors is after being gluten free and does not really count. I do not believe that one week is nearly long enough to be back on gluten. Whether you go back on gluten and for how long depends on how badly you react when you resume eating gluten and how badly you want the official diagnosis. Apparently you break out in rashes and have joint problems and lethargy as your main symptoms. If you do not have major GI symptoms you may well be able to tolerate a longer challenge. Those with severe GI symptoms often abandon the challenge. I would suggest that 4-6 weeks with a sandwich or equivalent per day would be the minimum. Since you still have residual? inflammation in your small intestine, it could take even less than that but there is no way of knowing without doing it.

Let's get back to your rash. Have you heard of dermatitis herpetiformis (DH)? This is the skin manifestation of celiac disease. It is very itchy/painful, tends to form pustules or blisters and then rupture, tends to leave scarring. There is a whole section of the forum devoted to it. You could go to this link http://www.celiac.co...-dh-photo-bank/ and see if your rash matches any of these pictures. If this is what you have you can have a skin biopsy taken immediately adjacent to an active lesion (should be done by a dermatologist who knows what he is doing) and a positive result is a diagnosis of celiac disease.

I hope this has been of some help to you. Come back and ask any other questions you have, and again, welcome. :)
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Caffeine free 1973
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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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#3 ciamarie

 
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Posted 06 January 2013 - 06:19 PM

I can't add anything to mushroom's excellent answer, except my own opinion would be to possibly challenge long enough to get a dermatologist biopsy for DH, but forget trying to get a biopsy by GI. I suspect if you try to go the GI route, you'll be one very miserable person long before enough intestinal damage is done. Especially since you said when you challenged for a week, the rash was all over. Many of us take much more than 1 weekend to get over it.
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#4 nekome

 
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Posted 08 January 2013 - 07:03 AM

Thank you mushroom and ciamarie, I really appreciate that you guys took the time to respond to my post. It's comforting to know that there's people I can turn to for help with this. :)
I've been gluten free since the biopsy so no rashes at the moment though I have just recently started a gluten challenge and I'm going to eat at least two slices of wheat bread each day for at least 3 months this time. I already made an appointment with the Celiac center for testing.. If it gets unbearable then I can try to bump up my appointment. I'll keep you updated!
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