Is it Celiac or isn't it? (and does it matter?)

[jbenfield]

Background (feel free to skip to the question..I kinda went overboard with the background and a lot of it probably isn't neccessary)
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About two years ago, I went to an allergist for screening for seasonal allergies. She ran through one of the most comprehensive symptom screenings that I've ever been through. I found out that "No...it's not normal to have bowel movements every 5-10 days and no...it's not normal to have diarhhea a few times a month...no, chronic vitamin deficiencies aren't just a sign of poor diet. Irritability and mood swings...not for 10+ years...Lactose intolerant, but you can eat cottage cheese? Nope..that's not right. Low HDL and you take Omega3 supplements? No...that's not normal". She suggested celiac screening and I took the request back to one of the GPs in the practice that I go to. I got pooh-poohed, told that it was highly unlikely, they don't do thoses tests, highly expensive anyways...yadda yadda and sent on my way. I didn't think anything of it.

Then a few months ago, I developed a (huge and ugly!) spontaneous bruise along the length of my arm. (I've had spontaneous bruising in my joints before this, but nothing so big and scary). The doctor mentioned vitamin K deficiency and it triggered my memory about the celiac. Again, I told them what the allergist had said...that I had never been screened and asked to have the screening done. I was told to wait a few weeks and see if it cleared up. Well...it got better, but I ended up with fresh bruising on my other arm...so they ran a boatload of tests on me. At the end, I asked...so, any aorrelation with Celiac? The answer that I got was "no. We don't know what the cause is but you don't have to worry about celiac".

My wife then got suspicious and started digging..."She said that you didn't have to WORRY about Celiac, but did she TEST for Celiac." Turns out that they didn't. Not only that, but when I went back to the lab and asked for a specific list of the tests that were done, nothing would have even hinted at celiac, let alone ruled it out.

I paid to have the whole set of Enterolab tests done.

Anitgliadin IgA, Antitissue Transglutaminase IgA, Fecal Fat score....all above normal. I also have celiac sequences on both alleles and an additional gluten sensitivity sequence on one. (and a reaction to cassein). I have very little gluten in my diet normally, since I do the cooking in the house and have always found wheat flour to be heavy and messy. I bake breads for the family, but I'm not a big bread, pastry or cake person. My only real bread weakness is pizza. So I would guess that the results could have been worse if I was snarfing bread on a regular basis.

Anyways...I took the results back to my GP and he said "Hmmm...looks like you have a definite gluten sensitivity. If you wanted to you could try to eliminate gluten from your diet. But it's a pretty drastic lifestyle change. You could try it." He was pretty blase about the whole thing and seemed more concerned about the fact that I felt that I'd been brushed off when I requested testing. (I could really care less....I get how hard it is to diagnose problems. I have a hard enough time doing it for equipment and organizations, I can only imagine how hard it must be to make sense of the human body and all of the different patient personalities)

Oh...as an FYI, I started going gluten free about three weeks ago (before I got my results back)...within 3-4 days, I started having a normal daily BM. (first time in 25 years and still like clockwork after 2+ weeks). I'm also not falling asleep at my desk during the day. So something is right about this.

Question
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So...here's the question part...If the symptoms, confirmed reactions, malabsorption and genetics all lean towards Celiac, is it safe to assume Celiac or should I be getting snaked? Is anything going to change based on the biospy? Is there anything medically that I can do other than diet?Do I need to find a doctor that's going to followup on this with me? Is there any reason to get "classified" as Celiac or just call it a gluten sensitivity and move on?

[celiacmaine-iac]

Hi JB!
Here's a link that might help you decide what to do.
http://forums.glutenfree.com/viewtopic.php?t=2995

This is my take on the whole testing thing. There are many differing opinions. I went the whole gamut of testing for a few reasons. I felt that with an "official dx" my kids' and grandkids' doctors might consider screening them for CD based on a dx rather than anecdotal evidence. I also felt that going GF was such a huge lifestyle change that I wanted to be absolutely sure it was necessary.

If you have CD you are at higher risk for other diseases. For some of the conditions the risk falls back to normal population risk after being GF for a period of time. For other conditions you will always be at higher risk. So, in my opinion a dx is important so that doctors are mindful of screening you for conditions that may arise from the CD. For example, a dx of CD should automatically trigger a doc to order bone density testing for an adult, because the malabsorption issues can cause osteoporosis.

Going for the diagnosis would also potentially rule out any other condition that might be causing your symptoms. i.e. Bruising can be caused by other potenially serious conditions.

[jbenfield]

Thanks for the reply Steph. The threads were very helpful.

It's just ridiculous what people have to go through to get a diagnosis. It seems to me that if the car sputters to a stop, gas gauge reads empty, and there's no gas apparent gas in the tank, you don't need to get a mechanic to tear apart the fuel pump to verify the verdict. Especially when filling up the tank makes the car run normally again. I'll probably consult with a specialist, but in all likelihood I'm not going to go for the biopsy without a REALLY good reason. "Gluten Free" is a given, so there's not much point as long as my GP knows the possible secondary issues.

[aklap]

Hi J,

Welcome!

Sorry to hear your trials and tribulations. Yeah, sadly, the avg length of time for diagnosis is around 9 years - it was 11.

Yes, bruising and CD do go hand in hand because of Vit. K def. That should be a red flag.

CD & Bruising

Getting an official DX? That's a matter of person choice. Some people need it, some people want it, others it don't matter. Check out the links below, maybe they'll help you to make a decision.


Compelling reason to dx by biopsy Biopsy or Not to Bipsy - That is the question.
Suspect CD, is dx worth it? - This discusses the value of getting an offical diagnosis.

I gotta tell ya - I had to laugh at the "getting snaked" comment. Just don't have the Rotorooter guy come and do it

Good luck!! Let us know if they find tree roots, bacon grease, dog hair...
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[cardine45]

I find it interesting that all of this started with your allergist. I just had an appointment with an allergy & asthma specialist yesterday that my doctor referred me to due to all of my extra issues (trouble breathing, itchy skin, always stuffed up, etc.) I almost cancelled the appointment because those symptoms are all but gone now that I've gone gluten free.
Anyway, the doctor asked me what prompted me to come, so I told him what had been going on, but was basically symptom free since after about a week of going gluten-free. He didn't flat out say it, but I got the impression that if my doctor hadn't caught the celiac disease, he would have. He was incredibly knowledgeable about the disease and said that doctors in his field often notice it first because they see all of the underlying symptoms that most people/doctors wouldn't ever associate with CD.
Has anyone else here been referred due to what the allergist said?

[voix]

So you had trouble breathing, too? And they were gluten-caused?

I went to an allergist/asthma specialist a couple of months ago. I thought that exposures to chemicals were giving me asthma type problems. My problem felt like the bottom third of my lungs would not engage, not fill with air. Tests showed that I did blow out a lot at first, which is not like asthma, but in the long run I was under normal.

The inhaler helped if I took three times the puff. It would finally get that low part of my lungs opening. Steroid inhaler didn't seem to help.

Doc said that it most likely was not asthma and not chemical-exposure-induced asthma type symptom.

Last appointment, I had started to not eat gluten and was feeling better, but only put the inkling together in the office. I asked if it could be related to gluten. He said no. I think I have improved a lot by just not eating gluten, though.

Were your breathing difficulties like I describe?

[Luv2Dance]

Yeah- my allergist is the one who started the whole thing for me few years ago. Trouble breathing was one of my symptoms when I went. He tested me for asthma and it was negative. He said I had Acid Reflux. Trouble breathing is a symptom of acid reflux- it causes something that makes it hard to breath as the acid raises through our system. From him I tol dmy PCP, who sent me to my GI doc, so on. Yup. Much less acid reflux and very little trouble breathing when gluten free.