With Celiac, Do You Always React To Gluten?

[jessdreams]

Hi all, I am really really hoping someone can help me out here...

Long story short I have been fighting stomach problems for atleast 5 years. Docs told me I had IBS. Ok so for about 3 years I was on zelnorm before it was taken off the market earlier this year. After having to go off it I went to my primary care doc to discuss ways to control the horrible cramping I would often get (presumably my ibs flaring up). After talking to me for a while he asks if I was ever tested for celiac, which I wasn't, so he orders the blood test (I go tomorrow).

So since this appt. I have been reading everything I can find about celiac and I think there is a good chance this could be what I have. But what I have 2 questions I can't seem to find answers to...any input would be GREATLY appreciated...

Ques #1: If you are celiac (assuming you are symptomatic) and you consume gluten will you have some sort of adverse reaction everytime? Is it always the same reaction? I ask b/c after keeping a food diary this week it seems like after almost every gluten containing meal I have some sort of reaction, but they vary, from bloating, to heartburn, to stomach pain, to gas, and also in intensity, from very mild to rather severe. Is this normal or does this variety mean it's not celiac?

Ques #2: I've read about DH and how it looks like genital herpes and that is how it got it's name. I also read that you can get a DH rash on your bottom. My ques. is whether or not you can get it on your genitals? I recently had a sore in my vaginal area (sorry if tmi) and freaked out and went to the ER they tested me for herpes as did my gyn. doc the next day...both tests came back neg!!! Could this have been a DH? How long do they usually last? Mine went away in about 5 days. Also with DH can you just be itchy with no rash? I have been insanely itchy for a year now, to the point where I had to pull of the road while driving b/c it was so bad! I've been to 4 derm. docs and an alergist, all tests negative! They just tell me to take clarinex =( Could this be DH?

I'm so sorry this is so long, I will be cutting out gluten after blood test but the waiting is killing me...are my hopes for a diagnosis up for nothing? Or could this really be it after all these years?

THANKS SOOOO VERY MUCH!!!

[Fiddle-Faddle]

Welcome, jessdreams!

Your reactions to gluten-containing meals are textbook celiac reactions or gluten-intolerance reactions (celiac is basically gluten intolerance that has gone unchecked and damaged the intestinal villi). Reactions do vary from person to person. Some people explode out both ends on consumption of gluten, some have no obvious reaction for years, and many are somewhere in the middle.

Most of us believe that IBS is simply undiagnosed celiac. Remember, IBS isn't an actual disease; it's a collection of symptoms --that just happen to be identical to the symptoms of celiac) that have eluded other diagnostic criteria.

Unfortunately, most MD's in this country don't know enough qbout celiac to even know what tests to order to check for it, and most that do still refuse to diagnose it unless they do a biopsy of your intestines and find a damaged patch of villi, which is a hit-or-miss operation, as villi damage is often patchy and only visible under a microscope, so if they biopsy an unaffected area, they are likely to tell you are fine when really, they can only accurately tell you that they patch they biopsied is fine.

DH is also not widely understood, except the experts agree that if you have it, you DEFINITELY have celiac. In addition, there are many other skin-rash-type conditions that seem to be triggered by gluten, like eczema and psoriasis. Obviously, the dermatologists would prefer to give you a cream or pill, because that's how they were trained to "cure." The pharmaceutical industry would certainly be very upset if skin conditions were cured by diet change, as they can't make money off a diet change!

On the other hand, my itchy DH-type rashes (I never was able to get a firm diagnosis on the rash) do become less itchy with Claritin, but worse with cortisone creams. I'm still trying to figure that one out!

I think it's wonderful that your doctor is actually testing you for celiac! Maybe he is one of the good ones...if so, let us know who he is and where, and we'll be lining up at his door! (You wouldn't believe how many of us have been told that our symptoms are all in our heads.)

In the meantime, this is a great place for info and support. Ask away! Let us know your results, and whether going off gluten resolves your symptoms!

[Jeni32]

I've known that I have Celiac for about a year now. The stomach pains started when I got pregnant with my first child (which I hear is pretty common). It was so weird though I only had stomach pains (really, really bad ones) every 4 or 5 months or so and with time the attacks got closer and closer, 3 months apart to 2 months apart. Until eventually they happened every week and then almost every time I ate gluten. My doctor had test after test for me to take. They checked my gallbladder and liver, which were fine, so finally he said that I should go see a GI. So I did and at first he though it might be an ulcer or acid reflux. He decided to do a blood test and a biopsy and found that I did have acid reflux disease and also that I had Celiac. But to answer your first question at first I only had bad reactions every few months even though I probably ate gluten everyday and the rest of the time I remember being ok.

It's funny that you bring up the second question. Well, not funny but I've been to the doctors a couple of times with the same problem and never thought that it could be gluten related. My tests always came back negative. But now that you mention it it very well could just be a reaction to gluten. So anyway, thanks! I never would have gotten that one on my own.

[gfgypsyqueen]

Hi, Not sure if I missed this in the original post somewhere, but be sure to continue to eat gluten after your blood test. Most doctors want a biopsy in order to declare Celiacs. And you need to be eating gluten to have the biopsy show any signs of damage. You can also request a gene test.

I think the avaerage diet for most people contains gluten considering I have found it in drinks, frozen meals, cereals, meats, fast foods, etc. Very likely all your symptoms are like the rest of us. Hope you get an answer soon, I know how miserable you are feeling now.

[Fiddle-Faddle]

Hi, Not sure if I missed this in the original post somewhere, but be sure to continue to eat gluten after your blood test. Most doctors want a biopsy in order to declare Celiacs. And you need to be eating gluten to have the biopsy show any signs of damage. You can also request a gene test.

I think the avaerage diet for most people contains gluten considering I have found it in drinks, frozen meals, cereals, meats, fast foods, etc. Very likely all your symptoms are like the rest of us. Hope you get an answer soon, I know how miserable you are feeling now.

The trend is finally starting to move away from the idea that a biopsy is needed to confirm celiac. Biopsies are invasive, and less accurate than the bloodwork.

There is also a serious issue faced by some on this board: an offical, biopsy-confirmed diagnosis of celiac disease can result in being denied health insurance and life insurance.

Since the outcome is the same either way--don't eat gluten--what is the point of a biopsy?

With all respect to gfgypsyqueen, who is absolutely correct in stating that gluten consumption is imperative for an accurate biopsy, I would advise eliminating gluten--and the damage it does--ASAP if your bloodwork was positive. (And be aware that many doctors read the bloodwork incorrectly, so make sure that you get the actual numbers!)

[zarfkitty]

Huh. I also had sores on my woo-woo (sorry TMI, too!) a few years back. They definitely weren't STD because they tested me for everything and they weren't yeast, either. It resolved on its own. I wonder if it was related.

I have a very itchy scalp with no flakes. I also have been through really bad acne (2 courses of Accutane to clear it up) which comes and goes as mild breakouts now. I'm hoping against hope that gluten-free helps with my acne somehow.

[jessdreams]

Thank you for all the helpful responses!!! I just had blood drawn this morning and have had no gluten all day....I go to my GI on thursday but really have no desire to have the biopsy no matter what the blood says...I've already had 2 and a colonoscopy years ago as they were "diagnosing" me with ibs. So far I feel good, a little gassy right now but I just had beans so I think that is it I am so glad I am not the only one who has had sores "down there" that were not std related! Glad to know I am not losing it or a freak of modern medicine!!!

Again thanks for the advice....I'll keep you posted on my progress being gluten free!

BTW: Are their celiac specialists out there? I would assume so but how do you go about finding them? Do they see patients? Anyone know of any in Jersey?