New To Group -- Do You Think I Have Celiac?

[txtherapist]

Hi all:

I've been lurking here for about a month and finally decided to post. Thinking I may have a problem with gluten sensitivity, I did the Enterolab "poop" test (really gross, but had quite the laugh in the car on the way to UPS, wondering if they would ask me if I wanted to insure the contents! ). Here are my results:

Fecal Anti-gliadin IgA 71 Units

Fecal Anti-casein (cow’s milk) IgA 31 Units

Fecal Anti-ovalbumin (chicken egg) IgA 9 Units

Fecal Anti-soy IgA 13 Units

Because anything over 10 is outside the normal range, I show sensitivities to gluten, casein, and soy.

Then they checked my fat malabsorption: Quantitative Microscopic Fecal Fat Score 1288 Units

Anything over 300 is outside the normal range, with over 1000 being in the severe range. Wow!!

Finally, I had my gene panel done:

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

No DQ2 or DQ8, but two gluten sensitivity genes, one of them a DQ7 which has been implicated in a low percentage of celiac cases.

Here's a history of medical problems I've had over the years, many of which I've seen reported as correlaeted with celiac disease::

Bedwetter till age 12 (so were my sister and brother)

Very irregular menstrual cycles

Chronic UTI

Fibromyalgia

Seborrheic dermatitis (severe) - started with "cradle cap" as an infant

Mouth sores

Episodes of tingling and numbness

Obesity since age 9

Diarrhea/Constipation/Stomach upset

Frequent eye twitching

Rosacea

Severe hay fever

Heart palpitations

Costochondritis

Kidney stones

Gallstones

Diverticulosis with 3 episodes of diverticulitis

Migraine headaches

Leukocytoclastic vasculitis (also known as cutaneous vasculitis), an autoimmune disorder

Possible Sjogren's - rheumatologist did not test for it, but believes it's likely, although I'm not so sure

I'm thinking I may be one of the few celiac patients without DQ2 or DQ8. I cannot have blood testing done because I've been gluten free and dairy free for about six weeks and have no desire to do a gluten challenge. I am feeling significantly better off gluten -- fibromyalgia pain is essentially gone, knees don't hurt, SD has cleared up, heart palpitations have slowed down, hay fever is reduced, UTI's have decreased, and I've lost about 13 pounds.

What do y'all think?

[shadowicewolf]

Eh, the treatments pretty much all the same. So it is possible for you to have celiac or NCGI.

[1desperateladysaved]

YES, I think so. Welcome to the club and please get better.

Diana

[txtherapist]

YES, I think so. Welcome to the club and please get better.

Diana

Thanks, Diana, I intend to!

I'd like to ask another question. Does the fat malabsorption in the severe range mean that there is villous atrophy/damage? If so, wouldn't this be enough in itself for a diagnosis as long as the malabsorption isn't caused by something else?

[txtherapist]

Eh, the treatments pretty much all the same. So it is possible for you to have celiac or NCGI.

I agree ... Treatment is the same. I've already noticed that my reaction to gluten is more severe than before I stopped eating it. At least, I assume it was gluten cross contamination. No more eating out for me for awhile!

It would be nice to know for certain if I actually have celiac disease. But, as I said earlier, I'm not going back on gluten. So, with the immensity of the combined experience, learning, and wisdom here, I wanted your opinions. They're worth more to me than that of most physicians!

[MaureenW]

Hi I'm new too! I have many autoimmune problems as well- many that you listed including migraines, kidney and gall stones, fibromyalgia (I'm pretty sure I have this - not diagnosed) and many bowel problems. At my last doctor's appointment, my Dr. told me that it was "normal" to have all of these problems together- I just had a "sensitive immune system" and most of her patients with migraines also had fibromyalgia, celiac, connective tissue disorders, etc. I just couldn't live with giving up finding a source of all these problems. I couldn't give in to being sick all the time. So I went back on the internet for the umpteenth time.

I found this video by Dr. Peter Osborne super helpful in explaining the difference between celiac disease and gluten sensitivity, and the link between gluten and all of the other immune system problems many people with gluten sensitivity have:

Open Original Shared Link (go down to the middle of the page to find the video by Dr. Osborne. It's 37 minutes long but well worth your time.)

After seeing this video, I have eliminated all gluten (including corn, rice and any and all grains- not just the typical wheat, rye etc.) from my diet. It's been 3 weeks now and I have had a huge improvement in all of my symptoms! Part of the improvement is probably that I've had to eliminate all processed foods because corn or corn syrup or corn flour or corn something seems to be in everything. In eliminating all processed foods, I've also eliminated BHT, dyes, colors and lots of other things that may be making me sick.

So basically I just eat chicken, fish, some nuts, and fresh fruits and vegetables. It's not easy, but the reward has been so great I don't care! I'm not cured- that's for sure. I still get migraines- but way less often, and for some reason I'm light-headed almost all of the time. But having come off of 9 months with constant migraines, I'm a happy camper right now. And bowel problems have all but disappeared.

I'm going to try to add back certain foods one at a time.But in the mean time, I'm getting back to work and enjoying my family more now that I'm not in bed so much. I hope this helps you!

[txtherapist]

Thanks, Maureen. I appreciate your input. I know we're all on our own gluten-free journeys, but so much of our stories overlap, and it helps to hear from others fighting some of the same battles. I've looked at Dr. Osborne's site -- he's in the Houston area, as am I. I'm struggling enough at the moment with avoiding gluten, dairy, and soy. Once I've got those down (and it's getting easier every day), then I'll look at the possibility of sensitiviy to other foods -- and possibly to other grains. Corn may be an issue for me.

I posted a question in another forum, but maybe I'll try again here. Does anyone know if other autoimmune disorders coincide with non celiac gluten intolerance? Or just with Celiac?

[txtherapist]

Okay, so I'm answering my own question here -- I just found this on the National Foundation for Celiac Awareness site:

Does having non-celiac gluten sensitivity increase your risk of developing other autoimmune disorders?'

Dr. Leffler: We don’t know 100%, but I would say that the fact that it doesn’t appear to share the genetic predisposition for celiac disease (that HLA-DQ2 and DQ8 which seem to be autoimmune predisposing), suggests that [non-celiac gluten sensitivity] is not likely to be as associated, if at all, with other autoimmune conditions. And I think, again, there’s been very little work done in this area, but the little work that has been done sort of suggests this as well – that there’s not an increased risk of autoimmune diseases in the non-celiac gluten sensitivity picture, but I think that clearly this is still a work in progress.

[During the webinar, a spot poll revealed that 8% of attendees reported having non-celiac gluten sensitivity and an autoimmune disorder. Dr. Leffler was asked to address this.] Dr. Leffler: Autoimmune conditions of various sorts are pretty common in the general population, thyroid disease being the most common. But if you add them all up, 5-10% of the general population will have some autoimmune disease, so the 8% of people in the audience with non-celiac gluten sensitivity really is about population level.

Maybe this will help answer someone else's question, as well!