I Just Love Confusion

[gaingus]

Ok, here we go. I was originally told I have Celiac from my regular doctor. I was later sent to a gastro who said I didn't because I didn't have the proper tests run. After my first biopsy and blood work, I was informed that the gene testing was pos for both genes, anti-body tests were neg and biopsy was in-conclusive. The gastro thought it was because before the test I was on the diet for 6 months.

So I go off the diet for 2 and a half months and go back for another biopsy and blood work that leads me to today. I got in touch with my doc today and the anti-body was again neg and biopsy was neg. So he says I am not Celiac but a sever gluten intolerance. Currently I am not sure what that means.

The DH symptom they decided is not DH and they are explaining it as just another way my body tries to get rid of the gluten. Has anyone heard of this before?

Like I said, I am really confused as to what is going on.

[GFinDC]

Hi Gaingus,

The way I have read it, DH is an indicator of celiac disease, and nothing else. So, if you were diagnosed with DH, that would mean you have celiac also. That is regardless of GI symptoms or villi damage, DH still means celiac.

[flourgirl]

It is confusing when you deal with doctors who don't seem to really know. gluten-free in DC in right, in that DH is DH is DH is Celiac. "Your body's way of getting rid of gluten" is DH by any other name!!! A negative biopsy only tells you that they didn't find damage where they took the biopsy from. You have the genes.....why is it so hard to conclude that it's probably Celiac! You don't have to have a diagnosis to get on and stay on the diet if it makes you healthy. Unless there is some reason you need the diagnosis, I'd leave it alone. Be healthy....and welcome aboard!

[OptimisticMom42]

Hello Gaingus,

My Immunologist would agree with the other answers you've received. He diagnosed me based on DH, D, family history and sudden onset of strong allergies to wheat, dairy, soy, barley malt, celery, sweet potatoes. Previous food allergy tests had been negative.

My Mom is also a patient of his. She said, "This happens to all the women in our family at middle age." The Immunologist said, "That's because you all have celiacs."

The gastro wanted to put me through the tests. I declined. My reaction to gluten is strong enough and quick enough that I don't need two doctors who agree that I shouldn't eat foods that make me itch and run for the john.

The reading I've done since my diagnosis has led me to believe that if I had known sooner and avoided intestinal damage I may not have developed all these other allergies. I can't even eat ketchup Last time I tried it made my eyelids swell up and itch.

You know you have the genes. Do yourself a huge favor and avoid all the complications by going gluten free.

Sincerely,

OptimisticMom42

[gfb1]

Ok, here we go. I was originally told I have Celiac from my regular doctor. I was later sent to a gastro who said I didn't because I didn't have the proper tests run. After my first biopsy and blood work, I was informed that the gene testing was pos for both genes, anti-body tests were neg and biopsy was in-conclusive. The gastro thought it was because before the test I was on the diet for 6 months.

So I go off the diet for 2 and a half months and go back for another biopsy and blood work that leads me to today. I got in touch with my doc today and the anti-body was again neg and biopsy was neg. So he says I am not Celiac but a sever gluten intolerance. Currently I am not sure what that means.

i hate to ask a silly question.... but....

were you better on the gluten-free diet?

if your symptoms were relieved while gluten-free, and returned after going 'off the diet' ... then, i think you have your answer (regardless of testing issues/opinions).

[gaingus]

Wow, thanks for the responses so far. To answer some of your questions....

I am a lot healthier on the diet than off and I have started returning to the diet.

Unfortunately, in the military I have to have the diagnosis so there can be arrangements made for me to eat while I am out to sea. Navy food used to be loved by every other branch of service. The problem is that we now get precooked heat and serve foods that are tainted with gluten. We don't even get fresh eggs anymore unless we are a Chief or higher. Fresh fruits and veggies are available from time to time. My major concerns have to be with what do I eat? I have tried to make arrangements but it hasn't held but for a day or so. It took some officers to go down and actually see what is available to us to see that there is almost nothing I can eat. The really funny thing is that I actually pay for the stuff I wasn't eating. I would be happy to be able to keep my food money so I can at least supply what I need for myself instead of paying for things I can't.

[GFinDC]

Wow, thanks for the responses so far. To answer some of your questions....

I am a lot healthier on the diet than off and I have started returning to the diet.

Unfortunately, in the military I have to have the diagnosis so there can be arrangements made for me to eat while I am out to sea. Navy food used to be loved by every other branch of service. The problem is that we now get precooked heat and serve foods that are tainted with gluten. We don't even get fresh eggs anymore unless we are a Chief or higher. Fresh fruits and veggies are available from time to time. My major concerns have to be with what do I eat? I have tried to make arrangements but it hasn't held but for a day or so. It took some officers to go down and actually see what is available to us to see that there is almost nothing I can eat. The really funny thing is that I actually pay for the stuff I wasn't eating. I would be happy to be able to keep my food money so I can at least supply what I need for myself instead of paying for things I can't.

Hey now, we had some pretty good grub in the Air Force, oh, 29 years ago or so. Most of the time I could tell exactly what I was eating just by looking at it! But they didn't let us grow beards or provide free fishing trips so what can you do?

I read that they have to biopsy around the edge of the DH blisters t get a good result. But DH is DH is celiac like the lady (flourgirl) said. If you get a positive for DH that should be all they need to declare it celiac.

Some info on diagnosing DH:

Open Original Shared Link

[gaingus]

i hate to ask a silly question.... but....

were you better on the gluten-free diet?

if your symptoms were relieved while gluten-free, and returned after going 'off the diet' ... then, i think you have your answer (regardless of testing issues/opinions).

I have an actual answer, as far as the Navy is concerned right now, I am Severely Gluten Intollerant until it is closer for me to retire. I stay on my diet, and trust me it does get hard at times, but I do manage.

[nora-n]

I have senn postings before where patietns asked to get a second opinion on the biopsies, and negative biopsies turned to positives. It depends on who looks at them....LIke, did the bother to count the intraeptthelial lymphocytes and how many do they think are normal....the number has changed recently.

Also, there were pathologists out there that only gave the diagnosis celiac if all the villi were totally gone.

That is no longer needed, they just need to be a bit blunted, or there are more than 2-3 intraepithelial lymphocytes per villi.

testing is not that perfect.

And, 2 months is only enough for some to be back on gluten, others need more, and I ahve seen a study where they put children back on gluten (they used to do that in the old days when they thought celiac was a childhood thing) they all relapsed, but it took from 6 weeks to 72 months.

The more sensitive test is the antigliadin IgG test but the more specific test is the tissue transglutaminase IgA test. Which ones did they tell you were the wrong ones? I would imagine it was positive, which one was that?