Received HLA-DQ Results today

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bubba
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Received HLA-DQ Results today

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HLA-DQB1 Molecular analysis, Allele 1* 02:01

HLA-DQB1 Molecular analysis, Allele 2* 03:01

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

Interpretation of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the genes that predisposes to gluten sensitivity and celiac disease, in your case HLA-DQB1*02:01. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity, in your case HLA-DQB1*03:01. Having one celiac gene and one gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten sensitivity or celiac disease may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

It takes me a little while of reading and re-reading the results to fully absorb it all. I guess this partially explains the very high Anti-Gliadin score that I had.

I still haven't been able to find any source of hidden gluten that I could have ingested other than that oat based gluten free bread that I stopped eating back in April.
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Post by tex »

Hi,

Your genetic results are similar to mine. Quite a few of us have a celiac gene in addition to a gene that predisposes us to MC.

I didn't test my anti-gliadin antibodies initially because I was sure that I was gluten-sensitive, but I'll bet the level was way up there, because I was really sick, and I had been reacting for several years. I'm probably a celiac, but my doctors never tested me for celiac disease. Anyway, in case this might be helpful:

My anti-gliadin antibody level (by EnteroLab stool test) was 62, 9 years after I adopted the GF diet (I adopted the GF diet in August, 2003)

My anti-gliadin antibody level (by EnteroLab stool test) was 11, 14 years after I adopted the diet (this was done two years ago)

I note that my Microscopic Fecal Fat Score was 294, 3 years after I adopted the GF diet (I didn't test it initially, because I assumed it would be quite high)

I'm pretty sure that my anti-gliadin level is slow to come down because there are probably traces of gluten in my diet, but that's just a guess. I'm extremely careful, but gluten is everywhere. The winds can carry flour for hundreds (maybe thousands), of miles.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by bubba »

Hi Tex,

Thanks for your info. Always helpful. I would have expected my numbers to be more like yours, given that I have been on a gluten free diet for so many years. But, clearly, I blew it somewhere. Still, the only thing I can come up with is the "gluten free" oat based bread I was eating.

I've been going through the pantry and checking and double checking all labels. I'm to the point where I think I will only purchase things like nuts, seeds, teas, buckwheat, vitamin supplements, etc. from dedicated, certified gluten free facilities.

You had said in a previous post somewhere that the half-life of gluten is 120 days. I'm trying to understand what that means in terms of how long it actually takes for the reaction to an accidental ingestion of gluten to be out of our system. Is there a way to figure that out based on the last date that food was eaten? Is there a half-life for dummies equation? Haha!

On a very positive note: I am getting much better, and feel I've turned a corner this past week. Normal stools for a week. So, I'm assuming this is a sign of healing taking place. I feel the inflammation is subsiding too.

Cathy
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Post by bubba »

I'm also trying to understand what the genetic testing means in terms of my son's sensitivity. He is 30 years old, and while he eats a healthy diet of no processed foods, limits sugars, no alcohol or smoking; he does not follow a gluten free diet. He doesn't have symptoms of gluten sensitivity. Looking back on my years, I had symptoms well before I reached 30, and probably all the way back to my childhood.

My mom, at 92 years old, does not and has never followed a gluten free diet. I believe she is sensitive though. She does have arthritis.
My dad died young at 50 yrs old, and I remember him having health issues, likely related to gluten.

Cathy
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Post by brandy »

Mom is celiac. I had zero symptoms at age 30. By age 45 I had joint pain in my hands/arms for 1-2 days
after eating a plate of wheat based spaghetti. I also had memory issues in my late 40's that I chalked up to aging.
Once I went GF due to MC at age 50 the joint pain and memory issues went away.
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Post by brandy »

On a very positive note: I am getting much better, and feel I've turned a corner this past week. Normal stools for a week. So, I'm assuming this is a sign of healing taking place. I feel the inflammation is subsiding too.
Great update! I had a feeling you would bounce back pretty quickly.
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Post by bubba »

Thanks Brandy!!
For now, I can’t convince my son to go GF, but I’m giving him all info so he can be informed.
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Post by tex »

Cathy wrote:Is there a way to figure that out based on the last date that food was eaten?
There are mathematical methods for calculating rates of decay and time intervals to certain stages, but it's been so ling since I used any of them that I don't even remember where to start. But the formulas would have to be modifies to allow for the differences in sensitivity (antibody production rates) of our individual immune systems. In other words, even though the antibodies (once produced) decay at a known (fixed rate), the rates at which our immune systems continue to produce them depends on a lot of variables, including (but not limited to) how long we have been reacting, if/when we have had subsequent exposures (to gluten) the sensitivity level of our immune system, health of our immune system (which can be influenced by vitamin D and magnesium levels), and probably our bodies' general health. IOW, decay rates for "normal" people would vary a great deal from decay rates of patients with varying rates of inflammation or disease.
Cathy wrote:For now, I can’t convince my son to go GF, but I’m giving him all info so he can be informed.
I'll bet we all have that problem with close relatives. So far, the only person in my family that I've been able to convince to follow a GF diet is a niece, and I doubt that she would be following the diet either if it weren't for the fact that she has MC.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by bubba »

Thanks for your reply Tex! So many variables. I guess we just go by how we are feeling and how our symptoms are. I feel like I'm having success, so I'm thankful for that! I always learn so much from your replies.
Cathy
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Post by tex »

One thing we've learned around here over the years: If we listen to our bodies they will almost always tell us how we're doing. If you feel as though you're improving, you're improving. As you're probably well aware, recovery rarely happens without a setback or two, so please don't be discouraged if you run into a bump or two in the road. Most of us would be surprised if that didn't happen.

The main consideration is whether antibody production is increasing, steady, or declining. An increase in antibody production initiates a "code red" signal to the immune system, and it responds by ramping up it's defenses. That causes new symptoms because of the release of histamines and various other proinflamatory mediators into the bloodstream. As long as the antibody level is not increasing, things slowly settle down, and our symptoms won't increase. And when antibody production is declining, we begin to feel much better, because then our immune system isn't hyperalert, and looking for trouble around every corner. And if there's no negative feedback (due to any reactions because of exposures to reactive foods), the level of alertness (and antibody production) will continue to decline until until the antibody level eventually crosses the threshold that takes it back down into the normal zone.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by bubba »

Thanks Tex! All good points to remember.
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Post by brandy »

Tex, I remember your niece popping on here. It is amazing she has MC too!

Cathy, At 30 I would not have changed my diet either but it would have been nice to at least have known
I might have a health concern with gluten decades down the road.

Be aware there is a time component to healing. You can be doing everything right and gut
healing just takes time.
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Post by bubba »

Thanks Brandy! Yes, I'll try to be patient while I heal and remember that some symptoms are just part of the healing process.

Yes, I agree, at age 30 I wouldn't have changed my diet either if I didn't have symptoms. My son doesn't have symptoms at this point - at least, not that he is aware of! So, I just keep sending him info so that he's aware when/if he does have symptoms what the likely cause is. Looking back, I had symptoms for many years - probably all the way back to childhood ( I have a lot of memories of being in bed with a hot water bottle on my belly as a child) - before I got hit so hard I couldn't ignore them in my 40's.

A month ago when I received my diagnosis of Collagenous Colitis, I would have started the Budesonide just to help with the inflammation while working on underlying cause of the inflammation. My insurance company would not authorize, so it would be up to me to pay out of pocket. Now, though, I know that I can get this under control just with diet; so in a way, I'm glad I didn't get that authorization. It has been rough, uncomfortable, and I've felt very ill, but now I feel so positive that I'm on the road to remission completely through my diet tweaks and changes. It gives me a good feeling of being in control of all of this.

I'm so thankful to have found this forum too. What a great source of information, help and encouragement you all are!!
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