Dq1 Genes - Share Your Symptoms - Compare Notes With Others

[ShayFL]

I am DQ1 and DQ3 per Enterolab.

My main symptoms are:

Vertigo - major episodes about every year or so. But daily a since of disequilibirium.

Ataxia - I feel like I am being pulled to the side when I walk

Neuropathy - Numbness/tingling in hands and feet. Sometimes they get hot and burn. Stiffness in the a.m. Creepy Crawly sensations all over my body sometimes.

Migraines - 2 times monthly

Muscle Twitches

Hypothyroid

Depression - the distymia (sp?) type

Lesser symptoms:

Dry Eyes

Some bone loss in jaw/spine

Low Libido

Tooth issues

Dry/cracked skin in areas (mostly feed/elbows)

Fatigue a lot easier than I used to

Since going gluten-free, I have seen improvement in my Migraines and my daily BM's are down from 5/6 a day to 2/3. Very little gas now. Right now my neuropathy and vertigo are really bad. And no chance of CC. Im anal. Brand new kitchen with all new equipment/cookware/utinsils, etc. Really I just got a new kitchen. Everything down to the drywall was gutted. All gluten foods were thrown out. Im cooking all my own whole foods. No eating out. ALL gluten free toiletries, cosmetics, etc. Even my dogs get gluten-free food. So dont know why the symptoms are worse.

I am interested in hearing what other have to say about their symptoms!

[Sientara]

I am interested in hearing what other have to say about their symptoms!

I am a double DQ1 per Enterolab. Currently on a gluten-free/CF diet. (since 3/13/08)

My main symptoms are:

Bloating, gas

Alternating Constipation and Diarrhea

Sinus congestion / pressure (gets worse with weather fronts moving in or out)

Acne

Dry Skin (heels, elbows, one knee)

intolerance to cold

ear pressure

heartburn

nausea (continuous, no vomiting)

dry eyes

mild fatigue

Commenting on some of your symptoms:

Vertigo - I have a poor sense of balance. I can fall over on a flat surface wearing flat shoes with my feet about a foot apart.

Muscle twitches - I twitch when I get really cold, but not at any other time.

Going gluten-free/CF has helped with the nausea, heartburn, constipation, and the sinus pressure.

[ShayFL]

I am on week 7 Gluten and Dairy Free.

Interesting looking at your symptoms. I didnt include symptoms I used to have like loose BM's and Gas/Bloating. Those have gone away fro me on the diet.

I too get strange ear pressure from time to time and weather changes can bring on a Migraine for me too.

[Rachel--24]

My main symptoms are:

Vertigo - major episodes about every year or so. But daily a since of disequilibirium.

Ataxia - I feel like I am being pulled to the side when I walk

Neuropathy - Numbness/tingling in hands and feet. Sometimes they get hot and burn. Stiffness in the a.m. Creepy Crawly sensations all over my body sometimes.

Migraines - 2 times monthly

Muscle Twitches

Hypothyroid

Depression - the distymia (sp?) type

Lesser symptoms:

Dry Eyes

Some bone loss in jaw/spine

Low Libido

Tooth issues

Dry/cracked skin in areas (mostly feed/elbows)

Fatigue a lot easier than I used to

Shay,

Have you been tested for Lyme Disease (Igenex)?

These are some of the main symptoms of Lyme. If you feel that some of these symptoms have intensified after going gluten-free...it could be that you have underlying infections.

Check out the Lyme Disease Thread for more info.

With those symptoms that would be the first thing I'd look into.

[ShayFL]

Thanks Rachel,

I had to go and check my records. I was tested for Babesia MIcroti, Ehrlichia Chaffeensis, HgEAb, Lyme, Q Fever, RMSF and Tularemia. All Neg.

[2boysmama]

My son has two copies of the DQ1 gene. His results are HLA-DQ 1,1 (subtype 5,5). He was diagnosed at 2.5 years and never had any neurological symptoms - though he did have added food allergies - egg, soy, and dairy, and would react VERY quickly to an exposure with rash/hives around his mouth, and a little later would have diarrhea/diaper rash. I've noticed that one of my main symptoms was edema with glutens as well. I have a history of migraines starting at the age of 10 - I'm not completely sure if they're really gone at this point. I wouldn't get them very often, and I've only been gluten-free for a little over a year and a half - no migraines so far. I'm happy to answer any questions if I can.

[ShayFL]

I suppose it is possible that neurological symptoms develop with relation to length of exposure to gluten. I didnt have them until 12 years ago. I am 39. I have been exposed to gluten for over 38 years.

[fedora]

I just put on the other topic Rachel posted about my symptoms. I am DQ1,5 and DQ2,2(the non celiac DQ2 gene).

My speech and vision symptoms started about 17 years into it. I had other symptoms that are neurological though for the whole time: nightmares, anxiety, depression, spacing out.

I have seen a huge improvement, though am still dealing with depression and anxiety( though they are much less)

also chronic constipation, itching, rash on hands, spells where I had a hard time talking ,thinking and things looked further away,

feeling sick when pooping, low blood pressure, anemia, hard time losing weight or maintaining weight.

[fedora]

HLA-DQB1 - Allele 1 - 0301

HLA-DQB1 - Allele 2 - 0602

Your genes are DQ1, subtype 6 also known as DQ6

DQ3 subtype 1 also known as DQ7. DQ7 is half of the celiac gene.

[ShayFL]

Discrimination between Celiac and Other Gastrointestinal Disorders in Childhood by Rapid Human Lymphocyte Antigen Typing

Clinical Chemistry 44: 1755-1757, 1998;

"Eight of the 122 celiac disease patients lacked both the heterodimer (**this referred to DQ2 all through the article**) and the DRB104 alleles; therefore, we further screened the DQB1 locus to investigate if other alleles were present in association to celiac disease (2)(14). Two of these eight celiac disease patients showed the DQ2 molecule (DQB10201 allele in heterozygosis); but one of them carried also the DQB10501 allele, also found in Sardinian patients to be associated to celiac disease (15); four showed the DQ7 molecule (DQB10304 or DQB10301 alleles). Another patient carried the DQ8 molecule encoded by the DQB10302 allele, and the remaining patient had the haplotype DQB10501 in homozygosis (15). The DQ8 molecule seems to be an alternative to DQ2 in influencing susceptibility towards celiac disease, being present in up to 20% of celiac patients not bearing of DQ2 in the Mediterranean area (2)(14)(16). Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten-derived peptides to restricted T cells (17). DQ7 has been detected in a few celiac disease cases in the absence of DQ2 but in association with the DRB104 alleles (18)."

***Very Interesting

[Rachel--24]

Thanks Rachel,

I had to go and check my records. I was tested for Babesia MIcroti, Ehrlichia Chaffeensis, HgEAb, Lyme, Q Fever, RMSF and Tularemia. All Neg.

Lyme testing is very unreliable. The vast majority of true Lyme cases test negative with labs such as Quest or other non-specialty labs. Its a hard one to diagnose since no test is 100% reliable. Kind of like Celiac...if the antibodies arent present at the time of testing (and there are several reasons why that could be) then results can be false negative. Because of that a negative test cant rule anything out and the diagnosis is primarily based on clinical symptoms.

There are a few specialty labs that have tests which are much more sensitive and often people are positive after having tested negative previously with other labs with lower sensitivity. Dr.'s who specialize in treating this disease dont ever use any lab other than one of the top labs specializing in tick borne diseases. One of those labs is IgeneX.

Tests that are run at less sensitive labs are very unreliable....the results are useless unless they come back positive. They are missing most cases of Lyme.

Make sure you were properly tested for these diseases.