Curious, Gluten Sensitive Most Likely, Wondering About Other Things...

[coldnight]

Got results from Enterolab, they were interesting and they did give and explanation, two gluten sensitivity genes, but not celiac disease. Not sure how common that is. I've seen some people post some really indepth information here, and I'm wondering if there is anything else anyone knows about these genes, or if they are fairly standard fare.. etc.. :

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

Thank you very much for your time and for your efforts to even understand this complicated stuff.

[Mother of Jibril]

You have DQ2.2. The good news is that DQ2.5 is the more dangerous version for celiac disease... but DQ2.2 doesn't completely rule it out. It's also linked to HLA-DR7, which puts you at risk for psoriasis, cardiomyopathy, and Graves disease (hyperthyroidism).

DQ6.3 is a actually a good gene to have. It's still gluten-sensitive, but it offers protection from a lot of autoimmune disorders plus HIV.

I know I've seen some other posts from you... have you been on the gluten-free diet? How do you feel? You don't have to be a double DQ2.5 to benefit from the gluten-free diet

[coldnight]

So far the diet has worked incredibly well. I've said it before but pre-diet medication = 8+ Lomotil, Klonopin, 120mg of Codeine, occasionally immodium on top.

During diet, dropped very quickly to 1 Lomotil. (Which is like a strong version of immodium). It has helped insanely well, really, haven't been able to get these symptoms under control for around 9 years. So, it's amazing, I'm just trying to find out if it's gluten or something else. As far I can tell, gluten makes a big difference, so I guess that's all that should matters. I'm going to avoid it certainly, I just want to make sure there's not some other factor I am missing. =) I appreciate the information, it is very helpful.

(And again, I'd do blood, but I got to gluten-free by process of elimination from a very basic diet to treat IBS. By that time it was too late, and doc says 2 months of eating gluten to do an accurate blood test, ugh.)

Thank you!

[Mother of Jibril]

ps - Without knowing the alpha chains, it's impossible to know exactly how common your genes are. In fact, I made an assumption that you're DQ2.2 instead of DQ2.3, since (according to Wikipedia) only 0.08% of Caucasian Americans are DQ2.3. You're definitely a DQ6.3... that's found in less than 6% of the same population, making it the 8th most common DQ type.

You can follow the links on Wikipedia if you want to know more!

Open Original Shared Link

[Mother of Jibril]

During diet, dropped very quickly to 1 Lomotil. (Which is like a strong version of immodium). It has helped insanely well, really, haven't been able to get these symptoms under control for around 9 years. So, it's amazing, I'm just trying to find out if it's gluten or something else. As far I can tell, gluten makes a big difference, so I guess that's all that should matters. I'm going to avoid it certainly, I just want to make sure there's not some other factor I am missing. =)

I think that's a very smart approach. Gluten can explain a LOT, but it doesn't explain everything. I feel fantastic overall being on the gluten-free diet, but my eyes have actually gotten worse. I think it's either ocular rosacea or Sjogren's disease... we'll see what my opthamologist says in January.

Also... have you noticed any other foods that bother you? When I stopped eating corn it took care of all my remaining abdominal symptoms.

[coldnight]

I'm suspecting corn at the moment, supposedly gluten free corn chips bother me quite a lot. I'm thinking of cutting corn. I have no idea why it would bother me, but I'm suspecting it does. I was going to go buy some specifically made gluten-free corn chips and see if they bother me. =) Good old trial and error.

[Mother of Jibril]

I never would have suspected corn either... of course, for years I thought I just had a problem with lactose I gave up corn to see if it would get rid of my casein-intolerant son's eczema (it did). I was pleasantly surprised to find that it helped both of us! Sadly, over the weekend I was out of town for a conference and my husband gave him a jar of baby food with corn... I had forgotten it was in the cabinet... and the eczema came right back. Poor little guy.

Trial and error is slow, but it gives you the best information. I would try going corn-free for a couple of weeks and then eat a whole bunch of it... tortilla chips, corn bread, popcorn, etc...

[fedora]

hi,

I have DQ2.2 also without the alpha part of the gene. The alpha part is located on certain DQ7 genes, but my other gene is DQ5. I also gave up gluten before I knew about all the testing involved for celiac.

I had low blood pressure, rashes, itching, depression, nightmares, constipation followed by pooping tons,hemorroids, brain fog, vision changes, difficulty thinking up the right word to say,anemia, angry and sad and bitter pms.....

all gone, all of them. It's crazy. I did give up dairy for awhile, but now eat it again. I don't usually eat other grains except rice and corn, but when I do I am totally fine. I tested out tons of foods too-corn, rice, soy,nuts, vinegar, yeast.....

It's all gluten.

DQ2.2 has been proven to show a reaction to gluten proteins, but most of the time it is not at the level that causes celiac. HOWEVER sometimes it does cross a threshold and causes celiac.

My opinion after studying it for weeks after finding out my genes is that for someone who has had the reaction to gluten triggered in them, then the chances of it causing intestional damage is high, but may take longer than someone with DQ2.5

I believe that it is likely I have celiac and my dr. agrees. My symptoms aren't just gut discomfort, but effecting many systems in my body.

good luck

[coldnight]

Fedora,

Yes, I've only been researching for a few days now, but it appears, at least in my layman's understanding, that DQ2.2 can show some immune reaction to gluten? This makes sense to me, I haven't read much about gluten since it is fairly new to me, but I've read reams about IBS, serotonin, histamine, mast cells.. etc. It seems to me, that most of the time the symptoms of IBS lead back to an immune reaction of some kind. For instance, I took Zofran (sort of like Lotronex) which blocks 5-HT3 serotonin activity in the gut. From what I understand, when you get the flu or eat something bad, your body recognizes it as an invader, it releases histamine and serotonin which cause the colon to spasm, speeding up motility and dumping liquid before it has had time to re-absorb it. I think there is something similar in IBS-C, but I have not read about it in-depth because it has not been an issue for me. Since Zelnorm and other drugs seem to mimic serotonin at the 5-HT3 receptors, I'd guess it might be over-stimulation of them that causes C.

At any rate, I assume this means that it's very unlikely I'm having an auto-immune reaction, but somewhat likely I have a regular immune reaction. Where the colon should hold all the liquid and food, and reabsorb the water (so the body doesn't lose it), something triggers the immune system and it freaks out, and tries to dump what it considers invaders? This makes a lot of sense in terms of all the IBS research I have read. The root cause they seem to come to in IBS research is that "the nerves are broken"... that the amount of serotonin is correct, but the nerves themselves are hyper/hypo-sensitive to serotonin. But the immune response makes just as much sense to me, again only in my layman's understanding of these complex processes.

Mother of Jibril,

I'm very interested in your experience with corn. I've been doing really well, I have realized after several attempts I cannot eat tostito's corn chips of any kind without some sort of bad reaction the following day, sometimes several days. I thought it was possibly gluten contamination, but I don't think there would be enough. I think it's much more likely the corn itself.

I was looking for a snack food that would be gluten free, so I got salted peanuts. I don't recall having a problem with peanuts before, so I don't think that is it, but they are dusted with something, so after I got incredibly sick again on thanksgiving until now (all I had was plain turkey and some peanuts and a banana =]), I read the label and saw they include cornstarch. So, where do you draw the line with corn? Corn syrup doesn't bother me, but it is appearing likely that either corn or gluten... probably both, make me quite sick. So, not looking for an exhaustive list, or anything that would waste your time, but how do you, generally, draw the line with corn? Is it possible that corn starch is far worse than corn syrup?

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Right now I'm so sick of trying to figure out what is ok and what's not, I'm just going to go back to the basic diet or meat, rice, salad, vegetables and a blandish bbq sauce which is gluten free and haven't bothered me at all. That diet seems sufficient, and I'll stick to just about any diet at this point. I'm tired of swinging back and forth from normality to debilitating stomach pain. (It was almost easier when I ate only relatively well and just took a handful of pills to compensate. =) Not really, I'd much rather be free of the medicine, but this is very hard to figure out.)

Thank you all for your input and help, I think you are providing something that I have been overlooking for a very long time, and I really appreciate your insight and advice.

[Mother of Jibril]

Mother of Jibril,

I'm very interested in your experience with corn. I've been doing really well, I have realized after several attempts I cannot eat tostito's corn chips of any kind without some sort of bad reaction the following day, sometimes several days. I thought it was possibly gluten contamination, but I don't think there would be enough. I think it's much more likely the corn itself.

I was looking for a snack food that would be gluten free, so I got salted peanuts. I don't recall having a problem with peanuts before, so I don't think that is it, but they are dusted with something, so after I got incredibly sick again on thanksgiving until now (all I had was plain turkey and some peanuts and a banana =]), I read the label and saw they include cornstarch. So, where do you draw the line with corn? Corn syrup doesn't bother me, but it is appearing likely that either corn or gluten... probably both, make me quite sick. So, not looking for an exhaustive list, or anything that would waste your time, but how do you, generally, draw the line with corn? Is it possible that corn starch is far worse than corn syrup?

I started by cutting out all the obvious sources of corn... corn chips, corn bread, corn cakes (they taste better than rice cakes), corn cereal (grrr... that eliminates a LOT of gluten-free cereals), corn on the cob, etc... Now I'm getting more strict about corn starch and corn syrup... I'll have to check my medications and supplements like I do for gluten (I've checked some of them already). I had a can of soup a few days ago with corn starch... I knew it was gluten-free, but I hadn't rechecked the label for corn. It gave me a new wave of gas and abdominal pain Also... it turns out my son (who I'm breastfeeding) gets terrible eczema from corn, so that's a good incentive to be careful.

Even if corn syrup doesn't seem to bother you, it's good to avoid it Especially high-fructose corn syrup. It's very addictive and overrides the signal from your brain that tells you you're getting full.

[coldnight]

I started by cutting out all the obvious sources of corn... corn chips, corn bread, corn cakes (they taste better than rice cakes), corn cereal (grrr... that eliminates a LOT of gluten-free cereals), corn on the cob, etc... Now I'm getting more strict about corn starch and corn syrup... I'll have to check my medications and supplements like I do for gluten (I've checked some of them already). I had a can of soup a few days ago with corn starch... I knew it was gluten-free, but I hadn't rechecked the label for corn. It gave me a new wave of gas and abdominal pain Also... it turns out my son (who I'm breastfeeding) gets terrible eczema from corn, so that's a good incentive to be careful.

Even if corn syrup doesn't seem to bother you, it's good to avoid it Especially high-fructose corn syrup. It's very addictive and overrides the signal from your brain that tells you you're getting full.

Yea, I think it makes sense, from what I read that corn syrup would have less proteins than corn starch. I think that in avoiding gluten, I have also avoided corn, up until I tried to branch out into gluten free foods beyond meat/rice/salad. There's no test for corn antibodies is there? hah. This is really not normal oscillation, I don't think you go for 9 years with D and stomach pain to back to normal after a week or so of the aforementioned diet. I think it has to be food allergies. I still feel bad, but slowly getting better, which seems to be par for the course, if I stick to a VERY plain gluten/corn free diet, I get better quickly, as soon as I eat either I get sick. I've been slowly testing this over the last few months, since I stumbled upon feeling well about 3 months ago. I guess I just need to stick to the plain diet, as long as I get all the nutrients one needs, I should be good.

I think I'm going to go back to the ultra simple diet for about 3 weeks, and see if I can maintain feeling well that long, if so, then I will furiously blame corn and gluten for the ailments I've had for basically my adult life. =) What do you think?

(Also, thank you again for the help, and I'm glad to hear your son is doing ok, except for the corn, but at least he'll know about it early!)

[Mother of Jibril]

I've heard about ELISA testing for food intolerances (which are different from allergies), but it's expensive and not very reliable. An elimination diet is considered the gold standard

I've been wondering the same thing about other intolerances... do they cause your immune system to produce antibodies? I don't know that anything has been proven. I do know that casein was doing terrible things to my son; for one thing, it was making his intestines bleed. From what I understand, it is a problem if you have a leaky gut (caused by celiac, candida, some other kind of infection, etc...) and undigested food particles start leaking out into your bloodstream. That's one thing that can prompt your immune system to produce antibodies that damage your own organs (intestines, liver, skin, brain, thyroid, pancreas, etc...).

I am glad that I have this information about my son NOW. Maybe he won't develop so many autoimmune disorders

You might think about reading "Breaking the Vicious Cycle" and using the SCD as a basis for your "plain" diet. The idea is to make it very easy for your intestines to digest your food so they have a chance to heal. Corn, gluten, and all processed foods are forbidden.