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jabberwife

Ok, So What Is Going On With Me?

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Hello everyone...I would love if someone would take the time to read through this and help me out! :)

Let me give you the big, full picture, so that maybe I can find someone else with the same difficulties I'm having. Celiac/gluten intolerance runs in my family, first of all. My dad was diagnosed about 15 years ago (biopsy), and my brother and sister both have gluten intolerance, although it has not been medically diagnosed. They were having major digestive "issues" with eating gluten. My sister also has an intolerance to corn, she discovered this about a year ago after going gluten-free. My dad can eat some corn, but is becoming more intolerant of it.

I have been "diagnosed" with IBS for about 4 years now. (I say diagnosed because it really doesn't seem like a "disease" to me) My biggest complaint is the awful gas I get after eating God-only-knows what, I can't seem to narrow it down. I also have mostly C, with some D. And usually feel bloated after meals--sometimes, my belly gets so distended I look 4-5 months pregnant.

I've suspected gluten more than once, given the family history. I had a blood test about 4 years ago, came back negative. I had the Enterolab test done last summer. Here were the results:

Antigliadin IgA 6 (normal <10)

Antitissue Transglutaminase IGA 5 (normal <10)

Fecal Fat 73 (normal <300)

Anti-casein IGA 5 (normal <10)

Gene testing--(which means that my mother and father both carry a gluten intolerance gene, which explains the fact that the incidence of gluten intolerance runs in my family so highly)

HLA-DQB1 Allele 1 0603

HLA-DQB1 Allele 2 0602

HLA-DQ 1,1 (subtype 6,6)

Ok...but after receiving these results, and being on a gluten free diet for about 45 days, I challenged with a bagel. I got really bad brain fog, but that was it. So I thought...well...that's not it. And gave up.

Fast forward to today. For the past 4 months, I have begun to eat very healthy, practically dairy-free and gluten-free, not for intolerance reasons, just as part of a natural, organic diet. I don't eat processed foods, really, don't drink Diet Coke or any sodas, no candy, etc. I went off of birth control pills (I took them for 12 years) and off of ADHD meds (Concerta) which I took for about 2 1/2 years. Mentally and energy-wise, I feel much better. I've lost some weight--not that I was overweight before, but I'm leaner now) However, I give myself "food vacations" every once in a while, and have some cheese, something with wheat in it, etc. Not as much lately though--I had pizza Friday night before last, and even though it wasn't greasy, I had immediate brain fog...like I was high. In a bad way. It was a super-spacey, unreal feeling. And then, Saturday morning, there was the D. Like 4 times. And I was weak, I went to jog and could barely make a mile (I've been jogging 3 miles several times a week). Well, I kinda laid low that day, and then Sunday went and had sour cream chicken enchiladas--the dairy gave me a bit of a tummyache a few hours later, and then C for the next week. I mean, I would go more than once in a day, but it was very little and looked like little pellets or something (sorry so graphic here guys!).

Overall, I've still had C pretty constantly. And it's not from lack of fiber or water, I eat 2-3 pieces of fruit each morning, drink a gallon of water a day, and eat probably 5+ servings of veggies a day. I don't eat a lot of greasy fatty stuff, most of my fats come from olive oil and nuts. I don't eat a lot of grains, and I've been diligently watching the gluten since the pizza incident. I'm not eating dairy since the pizza and enchiladas. But I still have the C issues, and the gas issues, and the "pregnant" bloating issues. What's up with this? I can't figure out what causes it.

So, am I still healing--if it's gluten intolerance--and that's why everything causes me to be "gassy"? Or am I intolerant to a whole bunch of things? I don't know what's going on! I would love to just be NORMAL, for once. So if anyone has any insight, please share!

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First off, if gluten causes problems it would be best to be off of it for life. You have a family history which gives you more incentive. The dq1 gene has been linked with neuro problems.

By challenging it you are just causing yourself more stress to you body. Sounds like you eat very healthy. I'm still working on increasing my veggies/fruits.

Stay gluten free and dairy free. Don't challenge! See if your symptoms resolve. If not try to pinpoint what else could be causing problems.

Have you gone through your personal care products? What about cross contamination in the home with other gluten eaters?


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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You might have an IGA deficiency which would cause your negative results to tests yet positive results to the diet. And you probably have form of gluten intolerance that affects the brain more than the gut.

Diary products can cause constipation, perhaps that is still lingering in your system?

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I have been trying to be very careful about CC in the house...and I've checked personal care products.

I read on IGA deficiency, and it seems as though in order to have that, you have to be someone who's likely to get infections often. I'm actually pretty resilient, I rarely get colds or flu or any infections. I haven't been sick since Thanksgiving (knock on wood...I'll probably come down with something now!)

I did just visit my chiropractor (who also has nutrition background, and is familiar with gluten and other food intolerances) and talked to him about some of the foods I'm eating, and he suggested to try to do a few days pretty low-carb (no fruit in the morning, no grains, just veggies and lean meats) and see if the bloating, etc goes down. And he suggested acidophilus. So, I'll still be gluten-free and dairy-free, but I might try that. Could be that the bacteria in my system are ALL sorts of confused lately.

I just dislike the inconvenience of an all-out elimination diet at this point.

And AndreaB, work on getting more of those veggies in your diet! It's amazing, I never thought I could actually "fill up" on veggies, but I'll go home and make myself practically a whole bunch of spinach, and a little chicken or something, and I can actually feel almost "stuffed" from the spinach. But it's sooooo yummy. Sometimes, the best way to eat veggies is to do very little to them, just steam or lightly saute them, with just a little salt and pepper. And to make sure you get more than enough veggies, make extra for your lunch the next day! I have become the queen of leftovers lately.

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Sounds like your chiro has a good plan for you.

Thanks. I find if I eat a salad it's easier to get veggies in. I'm just not consistent with that. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I read on IGA deficiency, and it seems as though in order to have that, you have to be someone who's likely to get infections often. I'm actually pretty resilient, I rarely get colds or flu or any infections. I haven't been sick since Thanksgiving (knock on wood...I'll probably come down with something now!)

Just to point out, It is possible to have IgA deficiency without knowing (i.e history of illness')


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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Just to point out, It is possible to have IgA deficiency without knowing (i.e history of illness')

Really? That's interesting. Would you have to show up on the IgA tests as having 0 or 1, or is something like a 5 or 6 still mean you could have the deficiency?

I have heard that this deficiency seems to happen somewhat more often with celiacs.

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Hello everyone...I would love if someone would take the time to read through this and help me out! :)

Let me give you the big, full picture, so that maybe I can find someone else with the same difficulties I'm having. Celiac/gluten intolerance runs in my family, first of all. My dad was diagnosed about 15 years ago (biopsy), and my brother and sister both have gluten intolerance, although it has not been medically diagnosed. They were having major digestive "issues" with eating gluten. My sister also has an intolerance to corn, she discovered this about a year ago after going gluten-free. My dad can eat some corn, but is becoming more intolerant of it.

I have been "diagnosed" with IBS for about 4 years now. (I say diagnosed because it really doesn't seem like a "disease" to me) My biggest complaint is the awful gas I get after eating God-only-knows what, I can't seem to narrow it down. I also have mostly C, with some D. And usually feel bloated after meals--sometimes, my belly gets so distended I look 4-5 months pregnant.

I've suspected gluten more than once, given the family history. I had a blood test about 4 years ago, came back negative. I had the Enterolab test done last summer. Here were the results:

Antigliadin IgA 6 (normal <10)

Antitissue Transglutaminase IGA 5 (normal <10)

Fecal Fat 73 (normal <300)

Anti-casein IGA 5 (normal <10)

Gene testing--(which means that my mother and father both carry a gluten intolerance gene, which explains the fact that the incidence of gluten intolerance runs in my family so highly)

HLA-DQB1 Allele 1 0603

HLA-DQB1 Allele 2 0602

HLA-DQ 1,1 (subtype 6,6)

Ok...but after receiving these results, and being on a gluten free diet for about 45 days, I challenged with a bagel. I got really bad brain fog, but that was it. So I thought...well...that's not it. And gave up.

Fast forward to today. For the past 4 months, I have begun to eat very healthy, practically dairy-free and gluten-free, not for intolerance reasons, just as part of a natural, organic diet. I don't eat processed foods, really, don't drink Diet Coke or any sodas, no candy, etc. I went off of birth control pills (I took them for 12 years) and off of ADHD meds (Concerta) which I took for about 2 1/2 years. Mentally and energy-wise, I feel much better. I've lost some weight--not that I was overweight before, but I'm leaner now) However, I give myself "food vacations" every once in a while, and have some cheese, something with wheat in it, etc. Not as much lately though--I had pizza Friday night before last, and even though it wasn't greasy, I had immediate brain fog...like I was high. In a bad way. It was a super-spacey, unreal feeling. And then, Saturday morning, there was the D. Like 4 times. And I was weak, I went to jog and could barely make a mile (I've been jogging 3 miles several times a week). Well, I kinda laid low that day, and then Sunday went and had sour cream chicken enchiladas--the dairy gave me a bit of a tummyache a few hours later, and then C for the next week. I mean, I would go more than once in a day, but it was very little and looked like little pellets or something (sorry so graphic here guys!).

Overall, I've still had C pretty constantly. And it's not from lack of fiber or water, I eat 2-3 pieces of fruit each morning, drink a gallon of water a day, and eat probably 5+ servings of veggies a day. I don't eat a lot of greasy fatty stuff, most of my fats come from olive oil and nuts. I don't eat a lot of grains, and I've been diligently watching the gluten since the pizza incident. I'm not eating dairy since the pizza and enchiladas. But I still have the C issues, and the gas issues, and the "pregnant" bloating issues. What's up with this? I can't figure out what causes it.

So, am I still healing--if it's gluten intolerance--and that's why everything causes me to be "gassy"? Or am I intolerant to a whole bunch of things? I don't know what's going on! I would love to just be NORMAL, for once. So if anyone has any insight, please share!

some vegies make gas- broccoli family, cauliflower, brusel sprouts. Cabbage is another gassy veggie.

Constipation may be related to the neuro aspect of this disease.It is my understanding celiac is a complex of disease states. Oh, you can be wheat sensitive or giladin or gluten or blah, but taken as a concept, an allergen in the body seems to trigger, gut, or skin or brain or muscle reactions. Your brain fog is classic. I have brain fog and have an inability to make muscle while I eat gluten. My son is constipated, no matter how much fiber we put down the gut, celiac diet or regualr diet, I think it may take 4-10 years before we see results. So my comment. Stay on some consistant diet, keep logs, vary one thing for two weeks. Let's say, no eggs, or only soy milk, or rice milk, and eat your celiac diet, you will begin to get a much better handle on what is hurting. also , we use miralax for constipation. I have been lectured to that it is habit forming. I think constipation for celiacs is far more dangerous. Keeping things too long in the large intestine is probably not a good idea. I shall refrain from my soap box. good luck M

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You could try calling Enterolab and see what they think. I talked with the nurse there and she was very helpful. I was asking her if there was a possibility of low IGA or IGA def. since with all family members that tested it's been either borderline negative or barely positive. She thinks it is a possibility so I got an order for the total IGA yesterday from my Dr. and will be getting it checked. It can change how you view the test if you are low or def. in IGA.

I called the number that was listed on the Enterolab website.

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Thank you everyone for your thoughts and suggestions. I've been trying to eliminate other things I think might be contributors to this problem. Last week I started to take acidophilus & bifidus, and some digestive enzymes. No real change. I also bought psyllium, thinking that since it was a nice, natural laxative and non-habit forming, it would help. Success--for the first two days. Then, I'm right back where I started. marfa, it's like you say with your son, it seems that no matter how much fiber I include in my diet, I'm still constipated. And more gassy than I was pre-gluten-free. I've started to think maybe I'm having a candida or bacterial overgrowth issue...I've been logging my meals for about a week now. Yesterday I started to eliminate all but my multivitamin and fish oil, thinking maybe all of the extra vitamins were contributing somehow. (I take a lot!) I seemed better until the evening, which was an improvement. But we'll see!

Thanks everyone!

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Thank you everyone for your thoughts and suggestions. I've been trying to eliminate other things I think might be contributors to this problem. Last week I started to take acidophilus & bifidus, and some digestive enzymes. No real change. I also bought psyllium, thinking that since it was a nice, natural laxative and non-habit forming, it would help. Success--for the first two days. Then, I'm right back where I started. marfa, it's like you say with your son, it seems that no matter how much fiber I include in my diet, I'm still constipated. And more gassy than I was pre-gluten-free. I've started to think maybe I'm having a candida or bacterial overgrowth issue...I've been logging my meals for about a week now. Yesterday I started to eliminate all but my multivitamin and fish oil, thinking maybe all of the extra vitamins were contributing somehow. (I take a lot!) I seemed better until the evening, which was an improvement. But we'll see!

Thanks everyone!

Have you thought about adding in magnesium to help with the C? I take magnesium supplements after reading how deficient we are in magnesium - The Miracle of Magnesium by Carol Dean. The only problem in taking too much of it seems to be a laxative effect (hence Milk of Magnesia). Something you may want to consider.

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Hi. :)

....I have become the queen of leftovers lately.

If you do have candida problems then leftovers are a no-no. :(

....Yesterday I started to eliminate all but my multivitamin and fish oil, thinking maybe all of the extra vitamins were contributing somehow. (I take a lot!) I seemed better until the evening, which was an improvement. But we'll see!

...

In my experience vitamins can be a real challenge to digest, particularly anything in a gelatin cap.

Reading your story reminded me of my own, for years I mostly avoided wheat and when I did indulge I would suffer a little but I would bounce back fairly quickly. Then one day I didn't bounce back, I got worse, much worse than I ever dreamt I could get. :(

So, I had that same kind of experience of not eating it for a few months, eating it and not feeling so great but no immediate heinousity.

It took me time to accept that I was going to have to change, I wish I had been smarter. :ph34r::lol:


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Hi. :)

If you do have candida problems then leftovers are a no-no. :(

In my experience vitamins can be a real challenge to digest, particularly anything in a gelatin cap.

Reading your story reminded me of my own, for years I mostly avoided wheat and when I did indulge I would suffer a little but I would bounce back fairly quickly. Then one day I didn't bounce back, I got worse, much worse than I ever dreamt I could get. :(

So, I had that same kind of experience of not eating it for a few months, eating it and not feeling so great but no immediate heinousity.

It took me time to accept that I was going to have to change, I wish I had been smarter. :ph34r::lol:

What do you mean by leftovers being a no-no? Is it because they might grow more bacteria in a certain time? If I can't do leftovers, I'm not sure how I'll manage lunch! A salad every day with a can of tuna just seems like it'd get awful old!

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According to the candida diet posted in the link above leftovers more than a day old should be avoided, so you should be okay if you prepare it the evening before. :)

I have heard no leftovers at all but I don't have a link to that. Sounds like you'll find this link works better for you anyways. :)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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