Jump to content
  • Sign Up
0
Neshema1

My Dna Results-I'm Confused

Rate this topic

Recommended Posts

Hi, I'm new here, but was dxd w/celiac at age 14 months (a long time ago & who knows how back then) when i had all the usual symptoms and began losing weight. My mom says I did better the many years as a child on the celiac diet. A few years later, I was told I had a trypsin (pancreatic enzyme) deficiency. I've had all kinds of health problems throughout life, which I can explain if needed. I have had severe bone density problems since my first scan at abt age 30. I have lots of vitamin, electrolyte, protein, albumin deficiencies & high cholesterol. As an adult every doc except GI, in reaction to my other health issues, asks me if anyone ever considered celiac. As far as I knew, my tests always came back negative. well, I got DNA results from quest & was told yesterday I am type 2.2 & going gluten free again may solve many of my other quite serious health issues. I was shocked. When I got home I looked at my copy of the results & a journal article my dr gave me. Well, I don't know if he didn't read carefully or if I really am positive. The test says I'm negative but then lists the following:

Dqa1 *01

dqa1 *02

Dqb1 *0202

Dqb1 *0501

does this mean I'm dqa1 0102 or 0201 or neither? What does the dqb1 mean? Am I positive for type 2.2 or some other type or negative? I'm so confused!!! I tried to figure it out but I just can't. I understand my other health issues, even if this was my first dx! I can't believe after all this time, I was told I actually have positive dna tests for celiac even though the report says negative. I'm supposed to meet with a nutritionist this thursday & my diet already is restricted so much & my life is very difficult. I'm glad to go gluten free if it will help me, but I need to understand these test results. The dr involved is impossible to reach by phone or email. He's not a major player on my medical team.. He's not my GI doc & I'd rather not bother her with this unless I am positive. Please explain! I have a doctorate but not in this! Thank you!

Share this post


Link to post
Share on other sites

Hi, I'm new here, but was dxd w/celiac at age 14 months (a long time ago & who knows how back then) when i had all the usual symptoms and began losing weight. My mom says I did better the many years as a child on the celiac diet. A few years later, I was told I had a trypsin (pancreatic enzyme) deficiency. I've had all kinds of health problems throughout life, which I can explain if needed. I have had severe bone density problems since my first scan at abt age 30. I have lots of vitamin, electrolyte, protein, albumin deficiencies & high cholesterol. As an adult every doc except GI, in reaction to my other health issues, asks me if anyone ever considered celiac. As far as I knew, my tests always came back negative. well, I got DNA results from quest & was told yesterday I am type 2.2 & going gluten free again may solve many of my other quite serious health issues. I was shocked. When I got home I looked at my copy of the results & a journal article my dr gave me. Well, I don't know if he didn't read carefully or if I really am positive. The test says I'm negative but then lists the following:

Dqa1 *01

dqa1 *02

Dqb1 *0202

Dqb1 *0501

does this mean I'm dqa1 0102 or 0201 or neither? What does the dqb1 mean? Am I positive for type 2.2 or some other type or negative? I'm so confused!!! I tried to figure it out but I just can't. I understand my other health issues, even if this was my first dx! I can't believe after all this time, I was told I actually have positive dna tests for celiac even though the report says negative. I'm supposed to meet with a nutritionist this thursday & my diet already is restricted so much & my life is very difficult. I'm glad to go gluten free if it will help me, but I need to understand these test results. The dr involved is impossible to reach by phone or email. He's not a major player on my medical team.. He's not my GI doc & I'd rather not bother her with this unless I am positive. Please explain! I have a doctorate but not in this! Thank you!

I'm not any help with your question about the DNA results, but your post REALLY interests me. My 14 month old had the DNA test and has 2 copies of the DQ8 gene. When we introduced wheat to him he got really sick. He's been gluten-free most of his life but really isn't growing like the doctor wants. He doesn't look sickly, but just short and smalller than most kids his age. He also might have a low pancreatic enzymes...one test said yes so they ran a bunch more tests but they all came back normal so they're re-doing the original test to see if it was correct. But because the first test did say he had a low level of pancreatic enzymes he's being tested for a rare genetic condition called Shwachman-Diamond Syndrome. I'll be interested to see what others respond with and see if there's a relationship between celiac and low pancreatic enzymes.

Share this post


Link to post
Share on other sites

I was always the smallest in my grade at school. I hope someone can help me with my test results. Ill have to look up ur son's dx.

Share this post


Link to post
Share on other sites

Neshima - Sorry, I also can't help but maybe Jestgar (a regular poster) or someone else will hop on. Or send her a P.M.

Quest should be able to explain the result to you.

Also, read this wikipedia article for background: http://en.wikipedia.org/wiki/HLA-DQ2

I do hope that you go gluten-free as it looks like you might benefit. Doctors used to think that kids outgrew celiac but now they know that is not correct. Good luck!

Share this post


Link to post
Share on other sites

Hi, I'm new here, but was dxd w/celiac at age 14 months (a long time ago & who knows how back then) when i had all the usual symptoms and began losing weight. My mom says I did better the many years as a child on the celiac diet. A few years later, I was told I had a trypsin (pancreatic enzyme) deficiency. I've had all kinds of health problems throughout life, which I can explain if needed. I have had severe bone density problems since my first scan at abt age 30. I have lots of vitamin, electrolyte, protein, albumin deficiencies & high cholesterol. As an adult every doc except GI, in reaction to my other health issues, asks me if anyone ever considered celiac. As far as I knew, my tests always came back negative. well, I got DNA results from quest & was told yesterday I am type 2.2 & going gluten free again may solve many of my other quite serious health issues. I was shocked. When I got home I looked at my copy of the results & a journal article my dr gave me. Well, I don't know if he didn't read carefully or if I really am positive. The test says I'm negative but then lists the following:

Dqa1 *01

dqa1 *02

Dqb1 *0202

Dqb1 *0501

does this mean I'm dqa1 0102 or 0201 or neither? What does the dqb1 mean? Am I positive for type 2.2 or some other type or negative? I'm so confused!!! I tried to figure it out but I just can't. I understand my other health issues, even if this was my first dx! I can't believe after all this time, I was told I actualy have positive dna tests for celiac even though the report says negative. I'm supposed to meet with a nutritionist this thursday & my diet already is restricted so much & my life is very difficult. I'm glad to go gluten free if it will help me, but I need to understand these test results. The dr involved is impossible to reach by phone or email. He's not a major player on my medical team.. He's not my GI doc & I'd rather not bother her with this unless I am positive. Please explain! I have a doctorate but not in this! Thank you!

I can't help you with interpeting the genetic test results but I'm confused about your statement that you were diagnosed at age 14 months but you don't know how. Are there there not medical records from back then? Did your mom just choose to make you gluten free as a child? Did you go back to eating gluten and then all those health problems started? Or have you been gluten-free through all those tests?

The genetic testing can not tell you whether you have celiac or not. It only assesses whether you have the most common genes and therefore have a higher risk of developing celiac. There are other genes which are less common and it is possible to have celiac withotu having the most common genes.

Share this post


Link to post
Share on other sites

Dqa1 *01

dqa1 *02

Dqb1 *0202

Dqb1 *0501

does this mean I'm dqa1 0102 or 0201 or neither?

It looks like they didn't subtype your two DQA alleles. There is only one DQA1 *02 allele, so it's *0201. Your other DQA is one of the five possible DQA *01 alleles. None of the DQA *01 alleles are associated with celiac so it's not very important.

In the common shorthand, you have DQ2.2 and DQ5.1. Your lab results say negative because they're looking for the genes that are somewhat more common in celiac, DQ2.5 and DQ8. Your doctor is correct that some people with DQ2.2 are gluten sensitive or celiac though.

You are really lucky to have run across someone with enough expertise to identify your possible gluten sensitivity. I hope the diet helps you.

Share this post


Link to post
Share on other sites

Omg, are u sure not dqa 0102? Are u sure the doc is right? Can u tell me like a children's story version of how u interpreted my data? I can teach really hard statistical proofs but I feel so dumb abt this... Probably cuz I'm in shock. If u all knew my story & how celiac may have contributed to SEVERE health problems gtg more in a bit. Home IV nurse here

Share this post


Link to post
Share on other sites

Cont'd ok Nurse left. I'm back-skylark & others who replied already. Thank you! Sky- do u mean they didn't test dqa2? Should I have that done to confirm or do we have enough info? How do we know I'm not dqa1*0102 not 0201? If I'm 0102 doesn't that mean I'm negative? U say 2.2 and 2.5. Doc just said 2.2 but it was kind of rushed at end of appt. He's had these results for a year & I was then out of state until recently, & he thought he told me & forgot & said "wait ur positive for celiac!" I about fell out of my chair that yet another doc was thinking this when my mom is sure that gluten free diet saved my life as a baby with very nasty diapers! I always had so much trouble gaining weight. I couldn't find work clothes in child sizes! Well, at age 9 I was dxd with juvenile arthritis...in the Hosp so many times as a kid with GI barium tests & unable to walk from arthritis. The moms of the arthritis kids all noticed their kids had GI issues. I later attributed it to the arthritis meds destroying my stomach. I couldn't tolerate them but

Now read meds can have gluten in them. Then 5 years ago, at the height of my career as a prof (who just lived with the GI mess) and never knew solid BMs if not for public toilets left unflushed, I was dxd with a nervous system condition. That has deteriorated. It's broadly called dysautonomia. However, my type of dysautonomia is quite disabling but I was the poster child for worst case & docs began to think it was a related dx, which is fatal or else mitochondrial disease (I'm referred for a workup which involved DNA testing too). My mom almost lost me during pregnancy & I learned I have Epstein Barr recombinant form (recombined DNA & RNA causing acquired duplications & deletions) but I also had a notorious bad strain of rubella vaccine which caused the arthritis onset & who knows what. But now I'm on disability, my life in a shambles, my prognosis grim, saying with my elderly parents with my house out of state that I'm

Too sick to sell, on daily ivs & a ton of meds to make my body work, including my heart, which is severely affected to the point I have an implanted EKG monitor. If I get a virus, I end up hospitalized for s week on ivs 24/7. My protein & albumin are several low, my cholesterol high, my sodium the lowest mayo ever saw, my WBC below 3, iron severely deficient, d untraceable & hard to control with 100,000 units rx d to point it caused parathyroid disease, and just about every body system affected. My blood sugar has been going up, insulin low, and the list goes on & on & am practically stuck in bed (not my thing at all) & so this doc does complimentary medicine & likes to figure out difficult patients. He takes chronic fatigue patients & fibro seriously. My friend with my illness pursued this route elsewhere & she knew of a woman with dusautonomia he helped even tho I see the top doc in the country in it & have been to mayo & another major place like mayo & even the cardiologist ran into the hallway at mayo after I left his office & said "wait! Has anyone ever told u that u have celiac!?!" again, I heard this broken record & told him every doc thinks that except GI. It didn't show on endoscopy. I thought I had a blood test. It's an enzyme deficiency but I tried enzymes again as an adult & they didn't work. So, that's actually the abridged version of my horror story.. & I'm dazed & confused now cuz the doc yesterday says gluten may have over the years damaged my nervous system, caused inflammation, & the diet might turn my life around, only for me to get home and think he misread my tests & me being confused over the printout of my labs & the articles & searching online & reading Wikipedia & everywhere & medical journals & wondering if I should order tests on my own& excited if I can help myself if it's true, or wondering if even if true, if I don't have villi if it's just genetic trait but not the disease, or if my bowel issues, deficiencies, bone density & even neuro issues along with DNA are conclusive. I kind of am in shock im actually positive & this could have caused me so many health problems & ruined my career & life as I knew it (although I always struggled to get by even before my neuro dx), & even led to docs telling me they think I have this worse related neuro dx that is fatal but can't be proven until autopsy. So, I really must understand (for dummies) my test results. This doc is impossible to get on the phone & id ask my GI doc but dont want to drop this info she missed until I'm sure I can explain. And, as I said I don't want to do the diet if my doc was wrong cuz I now also have gastroparesis & can't tolerate fats & am vegetarian (although that never caused low protein until recently ) & need hypnosis to eat meat. I just can't do it. And I'm allergic to eggs but never bothered me until recently. Ok, if gluten can do all this to a person who all these years was told she didn't need the diet my mom swears helped me, celiac is a very serious disease! Food even gives me seizures (not epileptic, but autonomic), food makes me so sick. Food makes me pass out. It makes my vitals go crazy. Ok, I think you all should know my story cuz it could happen to anyone. And, I must understand these test results & if I need another dq to be sure and why it's 0201 not 0102 & if the dqb1 is viewed in isolation or with the dqa1. Is there a dqa2 test? Could these results be markers for any other diseases? Why is dqa1*05 or 03 and dqb1*0302 more of interest to quest diagnostics? Do the other labs consider my results pos or report more? Sorry so long. Please please explain more. Thank you sooo much!

Share this post


Link to post
Share on other sites

Ok to answer how I was dxd then, it was early 1960s. I have records earliest from age 4. The docs told my mom I have celiac. I don't know if they had tests for it then. I think it was based on my symptoms (typical of celiac) & analysis of my diapers. The docs put me on the celiac diet & i stopped losing weight & my symptoms improved. Later, at age 4, I had tests for pancreatic enzymes. I'm not sure when they took me off the diet. I think I was put back on it at some point. I have to ask my mom.

Share this post


Link to post
Share on other sites

Hi, I don't know about your other diseases but when I was on gluten I had unexplained seizures. Yes, gluten can attack any part of your body not just the intestines. It can attack your brain and nervous system as well but there is currentl no way for them to test for that. Some of my symptoms prior to goign gluten free were muscle pain and weakness, joint pain, extreme fatigue, short term memory loss, shaking hands, lost of dexterity in my hands, etc. I was bed bound for a while because of the pain and fatigue.

Also just because your other tests were negative does not mean you don't have celaic. Aproximately 30% of celiacs test false negative. So the tests are not perfect. It does sound like you have a good dr that was able to interpet the gene tests properly. Very few drs know about celiac or even how to interpert the tests correctly. You should get coppies of all the tests you had done in the past so you can see exactly what they said. But remmember even if they are negative you could still have celiac or a gltuen intolerance. The only way to find out for sure is to try the diet for several months. Neurological symptoms do take longer to resolve. For me it took around 6 months before I saw significant improvement but I did have some things resolve within the first month.

Share this post


Link to post
Share on other sites

Oh, wow. You poor thing. I understand how being sick can put your life in a shambles. I almost dropped out of graduate school.

Your test results are TOTALLY clear and there is nothing more you would get from another lab. This is a more thorough genetic test than many people on the board have gotten. The genes they look at for celiac are DQA1 and DQB1, and you get two copies of each (one from each parent). The two genes encode the halves of the HLA-DQ complex that grabs onto gluten and presents it to your immune system saying "attack this". Your test is nice because they looked at both DQA1 and DQB1.

You have DQA1 *02 and DQB1 *0202 on one chromosome. The lab used DQA1 *02 as a "shortcut" for DQA1 *0201. That plus DQB1 *0202 makes DQ2.2. DQ2.2 is a gene that has been associated with celiac disease, though not as strongly as DQ2.5. This is the one your doctor is worried about because some celiacs are DQ2.2. http://en.wikipedia.org/wiki/HLA-DQ2

on the other chromosome you have DQA1 *01 and DQB1 *0501. The lab didn't figure out which one of the very closely related DQA1 alleles you have, but it doesn't matter, since it's not a celiac gene. This makes your second chromosome DQ5.1. http://en.wikipedia.org/wiki/HLA-DQ5 It doesn't seem to be too closely associated with any diseases.

DQA1 *05 is of interest to Quest because it's half of DQ2.5, which is very strongly associated with celiac. DQB1 *0302 is also called DQ8, and that is the other gene that is strongly associated with celaic. Most celiacs have either DQ2.5 or DQ8, a small percentage (like you) have DQ2.2, and the remaining 1% have other HLA-DQ genes.

So, have you started the gluten-free diet???

Share this post


Link to post
Share on other sites

sky-Thanks. Okay, just a bit more clarification and I think i will get it finally. THanks for your patience! I am so grateful. The Dqa1*01: is that equal to DQa1*0101, and the Dqa1*02 is equal to 0201? Somewhere else, I saw someone posted their DQa1 as 02 and 01 (reverse order of mine) and they were told that meant 0201, but are you saying we are both 0201 cuz the 01 as implied as the part of the entire number? If so, why was my second dqb1 0501, not 05? Are you saying the 01 and 02 are one from each parent? so is that 01:02, 01/02 vs 0102 or 0201? or are 0102 and 0201 the same things? so is my dqb1 0202/0501 (what is the notation)? Ok I reread one of your messages carefully, and are you saying the 01 is associated with other digits (e.g., 0101, 0102, 01xx), whereas 02 only can be 0201, and thus the 01 is implied? So, there is no such thing as 0202 for dqa1 for celiac? Is there for another disease? If they didnt report 02xx maybe the xx for 02 is for some other disease, cuz the testing say for celiac or would they have listed the xx if it werent 01? So, the dqb1*0501 was that listed that way because there are other 05xx possibilities, but if 0501 is not relevant to celiac, would the lab tell me if it is relevant to something else? Cuz I read something (well, I have read so much my head is spinning!), that one of these numbers is a marker for RA and some neuro diseases related to mine. So, I am just confused on the notation. I read the wikepedia stuff before I wrote to you and again today and I feel like I either am too shocked by this info or just too dumb to get it. Ask me about neurophysiology. I know that stuff! UGH!

What is the probability that I have celiac or gluten intolerance with this type (2.2?), cuz if I understand, it doesnt mean I have it, just the gene. So, with the negative scopes, but all the symptoms is that conclusive? which alleles are from the mother and which from the father?

I am supposed to see the nutritionist tomorrow. I hope I am not chasing for another cure that is not really my problem. my diet is already difficult. But if there is a high probability, I would benefit, I must do it!

Ok, so Manna, I really appreciate your message! I have my records from age 4 on, and my mom said back when i was a baby, they just looked at the diapers (and I was already potty trained and it was 12 or 13 mos) and I was on the diet and since I was better, my mom asked if I could outgrow it and try going off, so the doc was hesitant and said I wouldnt outgrow it but she could try it. Well I guess i was ok for a "short time," and was 4 by then (so had been on celiac diet from dx to about age 4) then it started all over and that's when they did stool tests for trypsin pancreatic enzyme deficiency which was positive both time they tested it, but still no test for celiac. So, I went on digestive enzymes which my mom reports helped, and I thnk I was on and off the diet, but by then I can remember that I was not really ok ever the rest of my life, but no one did much cuz they werent sure after I tested negative to celiac in the endoscopies. They thought it was crohns, but it wasnt. No one repeated my pancreatic enzyme tests later on. A doc gave me enzymes over 10 years ago, but I didnt think they did much. So, I just gave up. Then I remember an internist said to me about 8 years ago when i had more than bone density issues showing up, that sooner or later, the cause of my "malabsorption problem" would need to be identified or I would have big problems, which now I do.

Share this post


Link to post
Share on other sites

Ok, I went back to the Wikipedia pages, and from what I get (please tell me if I understand), dqa1 01 has 6 possible alleles (right word?) 0101-0106, and u r saying quest didnt tell me which. But, whatever it was, it is not found with my dqbs. and then the dqa 02 only has 1 possibility and that is equal then to 0201. The dqb2 of 0202 is of concern cuz it is the 2.2 type that is homozygous, which is unusual. if i understand and I am the homozygous 2.2 then that puts me at risk for other issues (I think it said like lymphoma, which runs in my family). the 0501 or DQ5 isn't a big deal. So am I homozygous or heterzygous? Did I get this right so far? If so, what is the probability I will have celiac or gluten intolerance and other issues? and, what is the predicted severity (like is 2.2 less likely to develop into celiac and could i actually have a different malabsorption problem or is it highly predictive of celiac and is it as severe as the other types?). I kind of dont get why quest would ignore this! Do other labs report this as positive? Ok, do I blame mommy or daddy? lol! Actually, I am curious. Thanks!!!!!

Share this post


Link to post
Share on other sites

You got it! You are DQ2.2 heterozygous, meaning you have two different genes (hetero = different), one copy of DQ2.2 and one of something else (DQ5.1 in your case). There is no way to know which allele came from which parent without having your parents tested.

In the big Prometheus lab study of 10,000 people who were referred by doctors for genetic screening, DQ2.2 heterozygotes with a second low-risk gene had 0.68% celiacs with anti-EMA antibodies (8 people out of 1176). That compares to 28% of people with DQ2.5 and another DQ2. This is why your test result was labeled "negative". It is still 4x higher risk than no DQ2 or DQ8 at all, which was only 0.16%. Apparently your doctor is good enough to understand that you have elevated risk compared to someone without DQ2 at all.

http://www.ncbi.nlm.nih.gov/pubmed/19500688 is the abstract. I had to look in the article to find the DQ2.2 heterozygote numbers for you.

Thing is you could very well be one of those DQ2.2 celiacs. There's another lady around here named Nora who reads a lot of research and she has said the DQ2.2 celiacs get pretty sick when they have it, and she thinks they're more gluten sensitive. There's also the possibility of non-celiac gluten intolerance, which seems to be able to cause malabsorption. We have a lot of those folks around the board. If you've had problems all your life with wheat it sounds very reasonable to go back on the gluten-free diet for a while.

By the way, I got curious and typed pancreatic insufficiency and celiac into google and Pubmed. Turns out 30% of untreated adult celiacs have pancreatic insufficiency.

http://www.ncbi.nlm.nih.gov/pubmed/1855688

http://www.ncbi.nlm.nih.gov/pubmed/20458623

Now I REALLY think you should try gluten-free!

Share this post


Link to post
Share on other sites

I second skylarks motion. Go gluten free. With the damage you have. It might take a while but I bet you will feel a lot better.

Share this post


Link to post
Share on other sites

Yes, thirding the motion here. You will do yourself a disservice if you don't go gluten free. In fact, it's a tragedy of modern medicine that you were ever put back on gluten. I'm a professor too and if you finished a PhD you are one tough (gluten-free) cookie, so I know you can do this. I hope you get a speedy recovery and some relief from your symptoms. Post again if you have questions.

Share this post


Link to post
Share on other sites

Sky- I am not seeing where heterzygous 2.2 without one of the other celiac types (2.5, 8, etc) has a risk. do I need the rest of the article? If so, I can get it through the university. Maybe 2.2 heterozygous with 5.1 means I am not at risk, unless I missed something. Thanks for your patience! Thanks for looking up the pancreatic stuff too. Really appreciate it. TX- thx for your input! OH DUH, u said u had to look in the paper. Ok, i gotta go retrieve it. Good to be tenured when you're sick...I sure seem too dumb to be a prof! Ok I will get back to u when I a. try to survive the shower, b. read the article when I am able to focus. I guess I am going to the nutritionist appt tomorrow. Yeah, I wish, I had the dqa1 info. Well, if it is 68% chance that is within one standard deviation or 1 standard error, okay translate that to IQ scale units, and u are betting in las vegas that someone's IQ is anywhere between 85 and 115, ur odds are good, 2/3rds the distribution. Okay, that is the way I think!!! I think we should protest to quest. I'll read the article before I make any bets. I think I saw 2.5 and 2.2 is bad combo. Does quest report that one? I guess it is rare, but sheesh, positive is positive. Ok, i will read before I say another thing to embarrass myself! I cannot believe this celiac. I was recently told I was fatal, and I am not so sure any of my big name docs can conclude anything if this diagnosis from back in the days no one heard of celiac is actually causing me problems!! Sky, I will owe u a lot if I get better and I wont forget u ever. But, ur not quite done yet. Hope u dont give up as I figure this out. I am finally understanding..almost there.

Share this post


Link to post
Share on other sites

Prof. thanks. I was head of a top ranked doc program at a major university, and made full prof at a young age. I supported countless doc students through school. The doctorate was easy for me. My life as a simple person now is very hard. My degree means nothing compared to who I am as a person. Getting really sick taught me a lot more than I ever knew when I was a big somebody to the rest of the world. I may seem to be less now, but I actually am more. Don't ever forget, it's not the cliche "you are not your disease," but rather, "you are not your degree." I wish more doctors thought about who they would be without their titles. Congrats on your achievements, but what I think matters more is you are here trying to help others. :) thanks!

Share this post


Link to post
Share on other sites

Wow, I have so much respect for you folks who manage that grant treadmill. I'm in my postdoc and looking for a nice, sane industry job. ;) Just getting the doctorate was hard for me because I was fighting my thyroid/celiac caused mental illness. I had to take a year leave of absence at one point in graduate school because I just couldn't function.

Neshema1, yes, the risk for DQ2.2/other was in the full article. I got it through my institutional access so you probably can too.

Your risk is 1 in 150. That's low compared to some genotypes, but it's not trivial. Also, please don't get too hung up on the risk numbers. Someone has to be that 1 and it could very well be you. Ravenwoodglass on the board was TERRIBLY sick and her doctors told her that as DQ1 she could not possibly be celiac. Turns out she is that rare DQ1 who is celiac, and she completely turned her health around going off gluten. She spends a lot of time reminding people that low-risk does not mean no-risk.

You have so many signs of malabsoption and the pancreatic insufficiency is such a signal. It sounds to me like you have absolutely nothing to lose by going gluten-free for a few months. Yes, the diet is restrictive but isn't a chance at getting well worth it? I ate nothing but lamb, rice, and lettuce for two weeks, and then after I re-introduced foods and discovered my sensitivities I spent a year eating gluten-free, soy-free, casein-free. It was a pain but I recovered my mind and my health. Even better once I healed I became able to tolerate soy, dairy, and even the shellfish I had given up earlier because of an allergy. Nowadays I eat anything but gluten.

Share this post


Link to post
Share on other sites

Went to the nutritionist. Took forever to get there, cuz the storm here had all traffic lights down. Arrived and they were closed due to no power. UGH! I am thinking of going to someone in my network at the hospital down the street, but then again, I thought maybe best to at least consult with the one who works with the doc who did my dna tests. So, I gotta also check all my medicines. Ok, I need to get that article and will write when I read it. I guess I am still not convinced, even tho i have lots of issues that would make every doc ask me if I had celiac. I just would think it would show in antibodies (well, I had that test once a long time ago and who knows if the lab was good or what) or in my endoscopies. I need a consult with a genticist or immunologist or something. I saw that celiac guy with the wife with dq2/dq5 will consult for a small fee. I wonder if his wife has celiac. Do u know? Does anyone know of others with dq2.2/dq5.1? Maybe manifestation is a bit different depending on which type u are. I gotta read the article. BBL. THANKS!!!!!!

Share this post


Link to post
Share on other sites

LOL! Stop reading and try the diet!!! :lol: :lol: :lol: :lol:

My own mother is celiac-negative by antibodies and endoscopy but she is DQ2 and shed a lifetime of stomach-aches and IBS going gluten-free. The tests simply aren't accurate.

Share this post


Link to post
Share on other sites

I gotta check all my medicines! UGH! I gotta go to the store somehow. I guess whole foods would work. I am a vegetarian. I dont cook. The nutritionist wasnt there today. Maybe I dont need a nutritionist. I mean I can read all the info. Ok, yesterday, other than meds (ok, that is gonna take forever to check), I didnt eat anything with gluten. I am already cured. just kidding. I guess where to buy food is a separate thread. UGH! How to tell my docs..another thread. I gotta read the articles, cuz I feel I need to be armed with the info. Kind of obsessive about making sure I understand.

Share this post


Link to post
Share on other sites

Is your mom heterzygous? DQ2.2 or 2.5? DQ2/DQ5 isn't a very convincing finding, despite my multitude of symptoms and hx and my mother swearing she remembers better than i do. Dont ya think after all these years, the endoscopy would show it?

Share this post


Link to post
Share on other sites

There are people all over this board who have negative celiac tests and get very sick from gluten. We don't know all there is to know about celiac, and even less about non-celiac intolerance. Mom doesn't have that much info. All we know is that she is DQ2 by serology.

I wouldn't worry about the docs. You do not need to justify a gluten-free diet to them any more than you have to justify your vegetarianism. Checking the meds is harder. I know there are sites - start a new thread and folks will tell you where to go.

Whole Foods is great for gluten-free breads, crackers, cookies, and so forth. I mostly get produce, nuts, milk, and meats at less expensive stores. If you need to eat a lot of processed foods because of your illness and fatigue, you might subscribe to Clan Thompson. Looks like they are going out of business but you could get the latest lists and use them until they to too far out of date. http://www.clanthompson.com/home/ I found their lists very helpful while I was first going gluten-free. You always need to check processed foods each time you purchase them because ingredients change, but a gluten-free list gives you suggestions.

You probably don't need a nutritionist, although with all your health issues you might get other valuable information. There is very good info on the main site here, http://www.celiac.com/, with links on the first page to the allowed and forbidden lists. Mostly, eat fresh, whole foods and avoid the processed stuff. It's easier. You can know for sure that a banana or a cucumber contains no gluten.

Share this post


Link to post
Share on other sites

LOL! I am not too into bananas, rice, or apple sauce after living on them for years!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×