Diagnosed As Gluten Intolerant This Week

[KPanther]

Hi! I just received my Enterolab results earlier this week, and your forum really helped! I'm trying to determine a little more info about the gene results. The results stated:

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,6)

Does this mean I am DQ1 and DQ3? I'm not sure what "category" I fit into!

When I found this celiac.com forum after receiving my results, I was SO GLAD to find other people out there "like me" in the same boat. I have felt very alone in this for a while, and not understood by others (except my husband). I have learned to keep my gluten intolerant/celiac issues to myself since people aren't very sympathetic (at least the people I work with!).

Here's a little background on me: I'm in my mid-30's, female, married to a wonderful husband, and I have a daughter almost 10 years old. I've been on a gluten-free diet since July 2007. My problems became noticeably worse in 2005. I had an endoscopy in June 2006 due to stomach pains and other related GI issues. They did a biopsy and said it was negative for celiac. I didn't think much of the results at the time since I had no idea what celiac/gluten intolerant was.

I continued to have issues, and kept visiting the GI doc. He mentioned something called "gluten intolerant", but said that it probably wasn't this...the biopsy came back negative. I did some research, and asked more questions over time. He told me NOT to put myself on a gluten-free diet, since this would make it harder to diagnose celiac in the future....I needed to keep gluten in my diet, he said, so that the tests would come back definitively in the future. I (temporarily) took his advice and kept gluten in my diet. After all...western medicine is always right, right?!?!?

Fast-forward to June 2007. I started to toy with a gluten-free diet since I was still miserable. I felt better in a few weeks, but I wasn't 100% strictly gluten-free. In July ('07), I had some birthday cake from DQ that had oreos in it. Whammo....my stomach swelled up to look like I was 5 months pregnant. I was in horrible pain, and I had to sit reclining (sitting up straight hurt!). I went to the GI doctor (a different one in the group...mine was on vacation). He ordered a CAT scan and MRI, stat. $1500 later (out of pocket costs for the scans), and all the doctor could tell me was that "there isn't anything pathologically wrong" with me....he had no answers to my swollen gut and horrible stomach pain.

I put myself on a total gluten-free diet after this lovely situation (this was July 2007). It's been about 18 months now, and I'm better. Not 100% better though - I still find that there is hidden gluten in some of my foods. My "Avoid these ingredients" list keeps growing as I keep doing more research.

I read a book a few months ago that talked about Enterolab. I thought that I should do the test quickly, since I have been on the gluten-free diet for 18 months. The results came back, and indicated that I have the celiac gene from one parent, and the gluten sensitive gene from my other parent. I also had elevated Anti-gliadin IgA, elevated Transglutaminase IgA. The fat score was in the "normal" range, and the anti-casein result was normal. So...my results stated that I am actively gluten sensitive (WOW! Even after 18 months gluten-free!) and I have gluten sensitive and celiac genes from both my parents. The lab also said that if my fat score was elevated (who knows what it would have been 18 months ago before I went gluten-free), that my doctor may have diagnosed me as Celiac.

I ordered a test kit from Enterolab for my daughter last night, since I know she will at least have one celiac or gluten sensitive gene from me. I suspect she may be gluten intolerant/Celiac too.

Looking back, I remember now some of those "little things" that now make sense....that maybe I was suffering from gluten sensitivity/Celiac for a LONG time. Growing up, I was always exhausted. I slept a LOT - maybe that's normal, and maybe not. I was always pretty scrawny (I was really made fun of in high school). I didn't reach 5'6" until my junior year in high school. My parents divorced when I was a freshman, and I lived with my dad in a tiny apartment. I had to buy a lot of my own food, so my diet considerably changed at that point (I can't really remember what my diet usually consisted of). When I was pregnant with my daughter, I had really bad stomach pains that were unexplained by my doctor. The ob/gyn put me on tylenol with codeine for the pain (even though I was pregnant...I was in that much pain). I had all sorts of tests during the pregnancy to find out what was wrong with me, and never found answers. After my daughter was born, I still had unexplained stomach issues. A GI doctor suggested I have my gallbladder taken out since the numbers were slightly off (I did have my gallbladder taken out, which improved my issues somewhat, but not completely). Because of all the pain I was in throughout the pregnancy (whenever I had a stomach pain flare-up, I had to do lamaze breathing to get through the pain), I decided not to have more children since I thought pregnancy just didn't agree with me. Maybe these issues are just coincidences and have nothing to do with being gluten sensitive...

I still have issues (even 18 months after being gluten-free) with a gurgling gut (loud enough where people hear it when I

[Mother of Jibril]

Welcome to the group!

There are four major types of HLA-DQs...

DQ1 (subtypes 5 and 6) is associated with neurological damage from gluten, such as ataxia, MS, depression, migraines, and bipolar disorder

DQ2 (subtype 2) puts you at the highest risk for celiac disease

DQ3 (subtypes 7, 8, and 9) is associated with a group of autoimmune disorders that includes lupus, rheumatoid arthritis, Sjogren's Syndrome and antiphospholipid syndrome (APS), which share a lot of the same antibodies. The subtype DQ8 is also considered a "celiac gene," but DQ7.5 and DQ9 seem to be the greatest risk for celiac disease in people who don't have DQ2 or DQ8

DQ4 (subtype 4) is the only DQ that is not considered "gluten sensitive"

When people say, "I'm a DQ8" they're actually referring to the subtype. DQ7 is also associated with cow's milk intolerance, but this is such a new area of research! I bet in the future researchers will associate other common intolerances (corn, soy, eggs, etc...) with certain genes. Not necessarily the DQ genes... there are also the DRs and the DBs.

[climbmtwhitney]

Hi.

Welcome to the forum! It's been enormously helpful to me over the last 5 months.

My reaction to your post is that you might have other food intolerances besides gluten. I'm casein free as well as soy free. The food that can make me (a thin person) instantly look 5 months pregnant too, is soy. Oh, that's a bad one. I'm in horrible pain within 2 hours of ingesting it. I've even considered the ER thinking I've been food poisoned. And, like you sometimes I can't bend either--have to lay flat and stretched out. So, check that one out. Also, I've noticed over time I've become hyper sensitive to soy. I used to be able to cook with Gluten-free Casein-free margarine (soybean oil and soy lecithin), but not anymore. I don't eat a smidge of it--so not worth it--I read EVERY gluten-free label for soy. Early on I ran the Enterolab test for soy and it confirmed what I was just discovering.

BTW I also have DQ1 DQ3 (gluten intolerant versions). And I'm one of the rarer ones that carry the alpha portion of the Celiac gene.

Good luck. I hope you figure it out soon. Sometimes we give too much credit to gluten. We keep looking for it and it's just not there--it's something else entirely. Maybe try a food journal or keep mental track.

Best,

Jill

[KPanther]

Hi.

Welcome to the forum! It's been enormously helpful to me over the last 5 months.

My reaction to your post is that you might have other food intolerances besides gluten. I'm casein free as well as soy free. The food that can make me (a thin person) instantly look 5 months pregnant too, is soy. Oh, that's a bad one. I'm in horrible pain within 2 hours of ingesting it. I've even considered the ER thinking I've been food poisoned. And, like you sometimes I can't bend either--have to lay flat and stretched out. So, check that one out. Also, I've noticed over time I've become hyper sensitive to soy. I used to be able to cook with Gluten-free Casein-free margarine (soybean oil and soy lecithin), but not anymore. I don't eat a smidge of it--so not worth it--I read EVERY gluten-free label for soy. Early on I ran the Enterolab test for soy and it confirmed what I was just discovering.

BTW I also have DQ1 DQ3 (gluten intolerant versions). And I'm one of the rarer ones that carry the alpha portion of the Celiac gene.

Good luck. I hope you figure it out soon. Sometimes we give too much credit to gluten. We keep looking for it and it's just not there--it's something else entirely. Maybe try a food journal or keep mental track.

Best,

Jill

Thanks for the info, and thanks for welcoming me to the forum! I think I will do the soy testing too now. The casein testing was normal (thank GOODNESS! I drink milk like there's no tomorrow). I have been thinking that I'm just a "weird person" who also gets that "mucous" reaction. Is this is a common reaction - bloating, gut rumbling, plus the mucuous?

Could you also clarify, am I DQ1 and DQ3? Enterolab said that I have one celiac gene and one gluten intolerant gene - one from each parent. How is your DQ1 and DQ3 gluten intolerant versions? How does that work? I thought all DQ1's were either celiac or gluten intolerant - (Not sure if DQ1 is the celiac gene, and if DQ3 is the gluten intolerant version). And what is the alpha portion of celiac? My results listed subtype 8,6 - I'm still confused as to what that means. Can you set me straight? (The results also listed "Allele 1 0302 and Allele 2 0602")

Thanks!

[KPanther]

Thanks! This forum is wonderful. I'm thrilled to "meet" another gluten sensitive/celiac person! I haven't come across anyone in my daily life (like work) who is gluten sensitive/celiac.

[Mother of Jibril]

Thanks for the info, and thanks for welcoming me to the forum! I think I will do the soy testing too now. The casein testing was normal (thank GOODNESS! I drink milk like there's no tomorrow). I have been thinking that I'm just a "weird person" who also gets that "mucous" reaction. Is this is a common reaction - bloating, gut rumbling, plus the mucuous?

Could you also clarify, am I DQ1 and DQ3? Enterolab said that I have one celiac gene and one gluten intolerant gene - one from each parent. How is your DQ1 and DQ3 gluten intolerant versions? How does that work? I thought all DQ1's were either celiac or gluten intolerant - (Not sure if DQ1 is the celiac gene, and if DQ3 is the gluten intolerant version). And what is the alpha portion of celiac? My results listed subtype 8,6 - I'm still confused as to what that means. Can you set me straight? (The results also listed "Allele 1 0302 and Allele 2 0602")

Thanks!

Only one of the DQ3 subtypes is considered a "celiac gene," and that's DQ8 (which is the one you have). All the DQ1 subtypes are considered "gluten sensitive," but the reactions can be just as bad and disabling as celiac disease... the damage just shows up somewhere besides your intestines. Everybody has two HLA-DQ genes; you happen to have a mixture of subtypes (heterozygous). Having the same subtype for both genes, especially when it's exactly the same gene (ravenwoodglass, for example, is a DQ9,9), puts you at a greater risk for any of the problems associated with that gene.

[ksymonds84]

Hello and welcome! Just a thought, since you say you drink a lot of milk, have you looked into Lactose Intolerance? It would have to do with the milk sugars not the protein casein. I am still lactose intolerant after a year of being gluten free and keep waiting that hopefully I can bring it back in my diet again someday. Lactose intolerance will bring all those symptoms that you are still having. You could try a lactaid ultra just before you have your milk and other dairy and see if that helps your symptoms. If that doesn't work, like the other poster said, a food journal could help.

[climbmtwhitney]

Could you also clarify, am I DQ1 and DQ3? Enterolab said that I have one celiac gene and one gluten intolerant gene - one from each parent. How is your DQ1 and DQ3 gluten intolerant versions? How does that work? I thought all DQ1's were either celiac or gluten intolerant - (Not sure if DQ1 is the celiac gene, and if DQ3 is the gluten intolerant version). And what is the alpha portion of celiac? My results listed subtype 8,6 - I'm still confused as to what that means. Can you set me straight? (The results also listed "Allele 1 0302 and Allele 2 0602")

Thanks!

KPanther,

Hmmm. Let's see if I can explain the gene thing. Someone please correct me if I get this wrong.

You have DQ3. DQ3 is a broad serotype category with split antigens HLA-DQ7, DQ8, and DQ9. Your subtype is DQ8 (allele 0302), a Celiac gene. My subtype is DQ7 (allele 0301), a gluten sensitive gene.

You also have DQ1. DQ1 is a broad serotype category that splits into HLA-DQ5 and DQ6. Your have subtype DQ6 (allele 0602) and I have subtype DQ5 (allele 0501). Both are gluten intolerant genes.

As far as my Celiac gene.....I also have HLA-DQA1*0501 or *0505 (test didn't say which). This is 1/2 of the DQ2 heterodimer, a recognized Celiac gene. Genes are made up of an alpha portion and a beta portion. I have the alpha portion of DQ2. (The beta portion is HLA-DQB1 *0201 or *0202.) Enterolab doesn't test for the alpha portion since only 5% of Celiacs carry this. Kimball genetics does test for it as well as the beta portion. Most have the full DQ2, but both the full version and the half version are recognized Celiac genes.

Hope this helps. It is very, VERY confusing. I've found a chart on wikipedia that helps. There's also a poster here, Nora (or Nora_n) that totally gets this and is good at explaining it.

Also, this helps for painful bloating: Drink about 1 to 1 1/2 teas. baking soda mixed in water. It's gross, but drink it all at once and then wash it down quickly. Someone here suggested it to me and it doesn't cure, but it definitely helps!

Best,

Jill

P.S. I agree with the poster that said to also try taking Lactaid. Your damaged system may not be able to break down the milk sugar (lactose). Lactaid just give you the enzyme (lactase) you need to break down the milk sugar. Lactase is produced in the small intestine. A problem with this wouldn't show up on Enterolab tests, because Enterolab tests for an intolerance to the milk protein, casein, not problems with milk sugar. BTW not producing enough (or any) lactase is a very common problem so it's a good thing to check.

[KPanther]

Wow...you are all so helpful and wonderful. I've never had this kind of support before. I literally have tears in my eyes as I type this.

Do you know if there is a test elsewhere (besides Enterolab) to check for lactose intolerance? I think I will have the soy test done through them, but I'd like to see if there is a lactose test somewhere too. It's weird, I haven't noticed a reaction everytime after I have milk. Is it possible to be lactose intolerant (not knowing it), and have sporadic reactions to it? I never considered my issue to be related to milk, since my bad reactions (bloating, gut rumbling, mucuous) only comes on every now and then - like every 2-3 weeks. I suspected that the issues were caused by something with gluten in it (and now I suspect it may have been 1 or 2 mysterious soy items that I never thought of), but not milk.

[ravenwoodglass]

Wow...you are all so helpful and wonderful. I've never had this kind of support before. I literally have tears in my eyes as I type this.

Do you know if there is a test elsewhere (besides Enterolab) to check for lactose intolerance? I think I will have the soy test done through them, but I'd like to see if there is a lactose test somewhere too. It's weird, I haven't noticed a reaction everytime after I have milk. Is it possible to be lactose intolerant (not knowing it), and have sporadic reactions to it? I never considered my issue to be related to milk, since my bad reactions (bloating, gut rumbling, mucuous) only comes on every now and then - like every 2-3 weeks. I suspected that the issues were caused by something with gluten in it (and now I suspect it may have been 1 or 2 mysterious soy items that I never thought of), but not milk.

Your regular physician can do a test for lactose intolerance. I believe it's a breath test of some kind.

If you drink a lot of milk and are lactose intolerant it would seem like it would happen on a regular basis not as sporatically as you are saying. I could be wrong about that though. Have you tried keeping a food diary? Some find that helpful. If it is a soy intolerance that could take a day or two before you react, like gluten does in some folks, so you should review the 3 days before the reaction as well as the same day to look for a pattern.

You could do challenge with soy also to see if it is an issue. You would eat it 3 times a day during a time when you are not eating anything else risky and are feeling good. If you do this you would want to avoid soy for a couple of weeks beforehand.

[ksymonds84]

A good test for the milk is to only drink a big glass of milk in the morning with nothing else and see if you get any symptoms within the next 3 hours. If you do get symptoms, try it again the next morning but take a lactaid pill first and see if it helps. If you have no reactions on the first day and you have already been tested for casein then I would challenge the soy. I drank soy milk only in the morning and got the same nasty gurgly symptoms and gass so now I stick to almond milk. Good luck!

[Amber M]

Wow...you are all so helpful and wonderful. I've never had this kind of support before. I literally have tears in my eyes as I type this.

Do you know if there is a test elsewhere (besides Enterolab) to check for lactose intolerance? I think I will have the soy test done through them, but I'd like to see if there is a lactose test somewhere too. It's weird, I haven't noticed a reaction everytime after I have milk. Is it possible to be lactose intolerant (not knowing it), and have sporadic reactions to it? I never considered my issue to be related to milk, since my bad reactions (bloating, gut rumbling, mucuous) only comes on every now and then - like every 2-3 weeks. I suspected that the issues were caused by something with gluten in it (and now I suspect it may have been 1 or 2 mysterious soy items that I never thought of), but not milk.

I understand the tears, I have had many of them, and the forum is where I began to really learn about the gluten sensitivity as well as celaic. My Genes (posted below) are gluten sensitive, but I have many other intorerances as well. I can do dairy, but I have been allergic to soy ( and all round beans for years). But now I can not eat any lugumes. I am allergic to clams for years too. I now can not eat corn either!!! (I hate this) I am having what is called "cross-reactivity." The only grain I can eat is rice. I did a lot of reasearch on this and what I understand is that once your body is used to fighting off the gluten (the anti-body reaction), it mistakes similar proteins for gluten and produces the same reaction as gluten. Night shades fall into this catagory as well. I had to give up the peppers and paprika. I still eat one baked potato a week, but sometimes don't feel well the next day.

I am still trying to figure it all out and just started a food diary myself. I have a few good days and then downhill I go. Because I have the neurological part of it, it could just be that there is permanent damage, or I have not healed completely yet. (I'm hoping).

The gluten sensitive genes usually cause more lower colon issues rather than full blown villi damage to the intestines. Colitis is very common with our genes. I am waiting, still, for my colonoscopy. I continue to do research on line as it is very difficult to find a doctor in my area that knows much about the "sensitivity" let alone celiac itself. Good luck, and welcome to the place where you can get answers from all over the world as well as shoulders to vent on when needed. Amber

[KPanther]

Hi.

Welcome to the forum! It's been enormously helpful to me over the last 5 months.

My reaction to your post is that you might have other food intolerances besides gluten. I'm casein free as well as soy free. The food that can make me (a thin person) instantly look 5 months pregnant too, is soy. Oh, that's a bad one. I'm in horrible pain within 2 hours of ingesting it. I've even considered the ER thinking I've been food poisoned. And, like you sometimes I can't bend either--have to lay flat and stretched out. So, check that one out. Also, I've noticed over time I've become hyper sensitive to soy. I used to be able to cook with Gluten-free Casein-free margarine (soybean oil and soy lecithin), but not anymore. I don't eat a smidge of it--so not worth it--I read EVERY gluten-free label for soy. Early on I ran the Enterolab test for soy and it confirmed what I was just discovering.

BTW I also have DQ1 DQ3 (gluten intolerant versions). And I'm one of the rarer ones that carry the alpha portion of the Celiac gene.

Good luck. I hope you figure it out soon. Sometimes we give too much credit to gluten. We keep looking for it and it's just not there--it's something else entirely. Maybe try a food journal or keep mental track.

Best,

Jill

Hi -

I just received my Enterolab results for eggs, yeast and soy. What a shocker....I AM intolerant/allergic to soy. You were right! I had a hunch that soy was an issue, based on your confirmation of soy reaction. About 6 weeks ago, I made some homemade granola mix with soynuts - towards the end of my granola supply, the soynuts had kind of gathered at the bottom of the container (heavier than the gluten-free puffed rice, sunflower seeds, etc). I was having a large amount of soynuts in the granola mix at the time I was having horrible reactions...and viola...I think the soynuts were causing the problem. I have since scoured my fridge and pantry - I need to find a new vegetable oil, butter spread (no more Country Crock), non-stick pan spray (I used generic Pam; had soybean oil). Boy, soybean oil is in a ton of stuff.

Well, at least I confirmed the hunch. Egg and yeast were in the normal range. Holy cow, this is still hitting me that I'm allergic/sensitive to yet another thing. I wonder if there are even more foods out there that I could have issue with?? I'll have to re-evaluate in a month after being soy-free. I'll have to keep that food diary that I haven't been that compliant with....

I'm still waiting for my daughter's results (basic gluten test...I suspect I need to check her for soy too). I think I should get her results by the middle of next week.

[ksymonds84]

I have a problem with Soy too. I can however (and others too even those allergic) tolerate the soy lethicin that is in the Pam Spray. Soy lethicin does not contain the soy protein so it doesn't bother me. I've also heard that soybean oil does not contain the protein but don't know for sure. Others may chime in. Glad you are discovering your other tolerances, it sure makes life easier to know.