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    Do you have questions about celiac disease or the gluten-free diet?

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I am female, age 34. After a lifetime of dealing with a constellation of seemingly unrelated health issues and worsening stomach/abdominal pain, I was referred to a GI for a celiac blood panel and duodenal biopsy. The panel was normal. I continued the gluten challenge I’d started prior to the scheduled biopsy and also ordered Enterolab’s celiac panel. My Enterolab results were positive for antigliadin, tTG, anti-casein antibodies, and negative for malabsorption (I finally canceled the endoscopy).

I have a pair of DQ1 genes (HLA-DQB1*0602, 0602) which I thought made celiac disease-type intestinal damage virtually impossible. But the anti-tTG result was positive—isn’t that supposed to indicate that intestinal damage indicative of celiac disease has already occurred?

For several years, I have been mostly gluten/dairy avoidant with brief periods of being completely gluten-free due to asthma and problems with digestion (constipation alternating w/diarrhea, bloating, pain, nausea). Six weeks into the gluten challenge, I had to stop due to mouth ulcers, stomach pain, swollen lymph nodes accompanied by occasional breathtaking pain, and a bizarre localized bruise-like headache, the likes of which I’ve never before experienced and hope I never do again.

Do any DQ1 people have some of the “typical” celiac digestive/systemic issues in addition to the neurological problems associated with this genotype?

Speaking of neurological problems: I’ve had about six episodes since I was a teenager when one of my toes will for no apparent reason go completely numb for two or three days, and slowly return to normal. It has never occurred to me to mention this to a doctor since it doesn’t hurt or happen very often and always goes away.

And I have, for most of my life, experienced brief episodes of dizziness (usually at least 3 or 4 times a week, sometimes more frequently). For instance, I’ll be sitting on the sofa reading and suddenly feel so dizzy that I will involuntarily close my eyes until the dizziness stops and I get reoriented. This passes in about five seconds and it has never been problematic so I’ve never bothered to mention it to a doctor.

Also, have noticed that when I eat gluten I will sometimes feel as if my tongue is really heavy and thick and it takes extra effort to speak clearly.

In addition, I tend to weave a bit when I walk, often resulting in bruises from walking into things like table corners and doorjambs. Again, this has never been severe enough to interfere with my daily life and may well be garden-variety lack of coordination on my part and have nothing to do with gluten. But I would like to know if anyone who has experienced initial stages of peripheral neuropathy or gluten ataxia thinks any of this may be significant.

Thanks for reading. I’d really appreciate any comments.

DQ1Squared

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Hi squared!! I haven't ever had my genes done, but I'm curious about them too. You symptoms read very much like some of the others in this forum, and I believe they are definitely gluten related. I don't think that there are ANY absolutes when it comes to celiac disease, gluten-intolerent, genes, gluten sensitivity, whatever.... It does sound like the gluten-free diet would be your best bet, and I'm sure that your symptoms will start to clear up, but it'll take time. I finally figured out after years of eating cereal with malt in it that I SHOULDN'T be. I really did know better, but it wasn't making me real sick so I thought it was okay. But what it was doing was still causing problems, but they were the slow kind - fatigue, headaches that were becoming more frequent, and numbness in legs and face. And dizzyness. Since I've been REAL REAL good for the past 6 or 8 weeks they symptoms have subsided quite a bit, but still some residual numbness in my legs in the mornings. Sometimes I feel like I'm walking on stumps.

Are you completely gluten-free? I mean besides food, there's meds, cosmetics, cross-contamination... Let me know if you're getting any better.

Annette

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Hi nettie! I was gluten-free for one week, started feeling better, then had half a hamburger (with bun) last weekend "just to see". BIG mistake! I am sure that most if not all of this health stuff is related to gluten.

One other thing that happened during the gluten challenge was that I woke up one morning and wasn't able to make a fist with my right hand until that afternoon. The strength just disappeared for a while although it did finally return. That was one of the most frustrating and unnerving feelings I've ever had and certainly made me rethink the challenge. I really feel as though the gluten challenge pushed my body into new and dangerous territory.

I'm now permanently gluten-free, including cosmetics. Some symptoms are going away and others have intensified; I believe the Enterolab website explains that antibodies can increase for some time after going gluten-free. Of course, my lapse didn't help either.

Re the dizziness...I now notice that the dizzy spells seem to be less frequent since that I've been (at least mostly) gluten-free for almost two weeks. The leg and face numbness you mention sounds a bit scary--have you checked this out with a doctor?

Thanks a lot for posting.

DQ1Squared

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One other thing that happened during the gluten challenge was that I woke up one morning and wasn't able to make a fist with my right hand until that afternoon. The strength just disappeared for a while although it did finally return.

<{POST_SNAPBACK}>

Wow :blink: - that reminded me that I used to have that EVERY morning for about 10 minutes upon waking up. I thought it was totally normal. Now I'm gluten-free I realise it's not! I had never attributed it to gluten. I couldn't even grab hold of a pen to write, there was just no strength at all in my hands. I know exactly how you feel!

Also, my mother has a paid of DQ1's and her tTG was positive. I have always been confused about this, but I guess it just proves that celiac or 'just' gluten intolerant, the damage is being done.

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Hi DQ1^2

Join the club. I self-diagnosed a gluten sensitivity and then tested with Enterolab with identical results as yours. I don't understand the situation with DQ1's and positive TTg either. I emailed Enterolab about this and here is their reply:

""

Dear George,

I will be happy to help you with your questions. Thank you for your

patronage of our services.

In reading Dr. Fine's research, you will find that the anti-tissue

transglutaminase is actually a reaction to gluten sensitivity and not

specific to celiac disease alone. For years this test has been used as THE

marker for celiac disease along with the genes and malabsorption, but

research has found that one could have a genetic predisposition to any

autoimmune disease for this test result to become elevated when you are

gluten sensitive. What this really means is there is an autoimmune reaction

taking place that may not necessarily be celiac related. This accounts for

the wide range of symptoms that people say improve on a gluten-free diet,

some of which you would never think to encounter with gluten sensitivity

alone. You may want to read the section on our web site entitled "Freqently

Asked Questions" and specifically the "Who should be screened?" section. It

might provide you with a bit more insight into this logic.

The antibodies formed in the intestine that we test for in the fecal

samples are the same antibodies that are being tested for in the blood. It

is just that it takes much longer for the antibodies being in production

for them to show up in the blood than in fecal matter located in the

intestine right where the antibodies are produced. This was a key factor in

Dr. Fine's research. Once the antibodies reach the bloodstream, there is a

high probability of intestinal damage, or villous atrophy. Please also keep

in mind that the casein antibodies that are produced in casein sensitivity

(yours were elevated) can cause this damage, too. Your fat malabsorption

test does not indicate damage at this time, so you have caught the

situation before damage could occur.

I cannot say that the antibodies must be circulating in the bloodstream

before a reaction to any autoimmune disease will manifest. I have read too

many stories from patients with negative blood tests and positive symptoms

ranging from skin rash to neurological disorders who test positive in their

stool samples to believe it must show up in the blood before other

manifestations occur. A gluten-free diet will usually help these symptoms

decrease significantly.

I hope I have been of some assistance to you, but please let me know if you

need further clarification.

Most sincerely,

Phyllis Zermeno, RN, BSN

Clinical Manager, EnteroLab

http://www.enterolab.com

""

I'm still confused as to how specific TTg is for celiac disease. Of course there are about 1-2% of those dx'ed with celiac disease who do not have DQ2 or 8(the "celiac disease genes"), so we could be among the unlucky ones. I have osteoporosis, mild anemia, Restless Leg Syndrone, and a tingling foot (Peripheral Neuropathy I presume). I also had some moderate gastro symptoms (gas, bloat, constipation) that cleared up within a couple of days of being gluten-free. All the above symptoms are frequently reported by gluten sensitive/celiac disease sufferers.

I've now been gluten-free since June and plan to retest for anemia in Jan to see if that has improved. My RLS seems to have improved with being gluten-free. At first my PN also seemed to improve but lately I'm not so sure.

Re weaving when you walk, that could possibly be related to gluten ataxia. Hopefully Claire will join this thread. She has lots of experience with this. If she doesn't join, do a search for some of her previous posts.

Also you might want to check out the Braintalk forums at http://brain.hastypastry.net/forums/index.php? Scroll way down this page and you will find an alphbetical list by neurological conditions. Of interest might be "Ataxia", "Peripheral Neuropathy", and of course "Gluten Sensitivity/celiac disease"

I hope this helps. If you discover anything more about DQ1's with positive TTg, please post it.

George

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I have a pair of DQ1 genes (HLA-DQB1*0602, 0602) which I thought made celiac disease-type intestinal damage virtually impossible. But the anti-tTG result was positive—isn’t that supposed to indicate that intestinal damage indicative of celiac disease has already occurred?

Do any DQ1 people have some of the “typical” celiac digestive/systemic issues in addition to the neurological problems associated with this genotype?

Thanks for reading. I’d really appreciate any comments.

DQ1Squared

<{POST_SNAPBACK}>

Sounds very familiar. I'm also DQ1,1. Experienced the frequent dizziness, one ER visit with severe vertigo, numbness, tongue tied speech, etc.

Before I was tested by enterolabs, had colonoscopy and endoscopy. The biopsies came back positive for celiac. My relatives with DQ1 had abnormal biopsy results with lymphocytes on villi tips. Many people say you cannot have an abnormal biopsy without DQ2 or DQ8 but I know many people with such. Does this fall into the rare 1% celiac without DQ2/8? I don't know.

Dr. Fine at enterolabs states that DQ1,1 and other double gluten sensitive genes can make things worse. I'm hoping that someday the powers that be (gene namers?/deciders?) are convinced enough to add the DQ1 gene types to the list of Celiac genes. Don't know how that thing works but I believe there are enough people on celiac.com that could tell their stories and medical histories to convince someone how seriously DQ1s are affected.

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Thanks everyone for the responses! Sorry to push this thread back up but I was away over the holiday.

Cornbread, I’m glad I’m not the only one who has experienced the hand weakness scenario. I remember even as a kid that my hands took a little while to “wake up” every morning (similar to what you’ve described), but the gluten challenge really pushed it over the edge.

Nevadan, thanks so much for posting your Enterolab correspondence. I too am still confused about whether tTG is specific for celiac disease or not. I was planning to email Enterolab regarding the DQ1/tTG question, but I think I will save it for an upcoming appointment with a gastroenterologist who is familiar with Enterolab testing.

Kelliac, wow! Since I’ve been gluten-free for two weeks now, I’ve noticed that that the dizziness is occurring with less frequency. Still happens some, but not as often as before.

I am going to print out this thread and save it for reference. This has been an enlightening yet confusing couple of months and I really appreciate you all taking the time to respond. If I find out anything of further interest to DQ1s, I will certainly post.

DQ1Squared

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Crazy thing! read this: http://ghr.nlm.nih.gov/gene/HLA-DQB1

I have HLA-DQB1 0501 and 06**. inhave started suspecting the 06** is an 0602 because of the problems I have. You know, they always tout DQ2 and DQ8 when they talk about celiac disease so I figured I probably had non-celiac gluten sensitivity. Well, been reading over this 0602 info available on the Internet, and it keeps saying DQB1 0602 is associated with celiac disease!!! as the info atbthe link above will tell you, an alternate name for the DQB1 0602 gene is CELIAC1!!! how crazy is that?

I do have a lot of dizziness - orthostatic hypotension. I also have issues that appear to be related to hypertension. I've even started to look into following a diabetic diet in addition to the gluten. I have neuropathy issues as well. You might look into LADA, a strange atypical type of diabetes (usually thin people) that usually has adult onset, also associated with 0602. it appears to me, after much reading, that it is a separate type from types 1 or 2 with some similarities to both - thus sometimes called type 1.5. Serious stuff. Hard to get a diagnosis because physicians don't recognize it. But people who have it need to figure it out because it leads to complete lack of insulin production in the body. A pubmed article I read seemed to indicate that a study showed a gluten-free diet seems to delay its progression. a person with LADA will absolutely require multiple insulin shots daily once the thing has run its course.

Good luck. I'm about to try and research some (google) on HLA-DQB1, atypical celiac disease - to see if my symptoms line up. This is all very intriguing to me.

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