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gluten-free People From Western Md?

Link

By Link
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Link Rookie
Link
Posted

Hello,

I have many food intolerances besides gluten...namely casein, corn, soy, eggs, yeast and probably some I don't even know about yet. I elected to have only the stool testing and gene analysis done by a lab in TX which confirmed the gluten intolerance, casein, egg, soy, & yeast intol. I never had the biopsy or the blood work which apparently are the "gold standards" of detecting Celiac/Gluten Intol. The GI research/specialists will only see people who have already had all these tests done which I don't intend to have done due to a lapse in ins. coverage. So, I am wondering if anyone else in Western MD has anything similar to all the intol-

erances I have, and what on earth do you eat? At present, my insides are totally out of whack due to something I ate a month ago...and I can't get it under control. I am frustrated, depressed, angry, and sad that life has gotten so difficult for me. I have also learned that my three children have all inherited a gluten intolerant gene from me, and all three have immune related problems due to the gluten intolerance...some very severe. Of course, I feel guilty about that as well. Anyway, I would love to hear from those of you in my area that are suffering with this dreaded condition and commiserate, possibly start a support group.

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srsssss Newbie
srsssss
Posted

Hello,

I have many food intolerances besides gluten...namely casein, corn, soy, eggs, yeast and probably some I don't even know about yet. I elected to have only the stool testing and gene analysis done by a lab in TX which confirmed the gluten intolerance, casein, egg, soy, & yeast intol. I never had the biopsy or the blood work which apparently are the "gold standards" of detecting Celiac/Gluten Intol. The GI research/specialists will only see people who have already had all these tests done which I don't intend to have done due to a lapse in ins. coverage. So, I am wondering if anyone else in Western MD has anything similar to all the intol-

erances I have, and what on earth do you eat? At present, my insides are totally out of whack due to something I ate a month ago...and I can't get it under control. I am frustrated, depressed, angry, and sad that life has gotten so difficult for me. I have also learned that my three children have all inherited a gluten intolerant gene from me, and all three have immune related problems due to the gluten intolerance...some very severe. Of course, I feel guilty about that as well. Anyway, I would love to hear from those of you in my area that are suffering with this dreaded condition and commiserate, possibly start a support group.

YES!!!!

I'm having pretty much the same promblems you describe. I'm in western MD.

I have family memebers with celiac and also I have Dermatitis Herpaformaris. I had a biopsy done 3 years ago that was negative but my symptoms were so bad it prompted me to eliminate some gluten from my diet. I got diagnosed by a dermatologist by the DH.

When I saw the specialist in Baltimore I didn't need any testing to prove. He said my dietary reaction and skin was enough.

I've been on prednisone for a breakout I think has been caused by almond milk from 4 weeks ago. I had chocolate with almonds in it the other night and had similar breakout. I am pretty sure I'm also allergic to Soy, peanut butter, lactose, MSG, maltodextrin (in a lot of spices) some fruits and vegetables and now almonds.

I am supplimenting my diet with "Boost Resource" It's a juice drink but has to be ordered from medical supply.

I also eat lara bars a lot.

My dad has had it for 20 years and 2 of my 3 younger sisters are just discovering they have it as well.

I eat a lot of meat that has a small amount of (mccormick spices) on them, vegetables and bland fruit. Also thai rice noodles, basmati rice (hate white rice) and I'm still working on other things to eat.

It is really darn frusterating.

S.

Link Rookie
Link
Posted
  • Author

Dear "S"

Nice to hear from a fellow Western Marylander!!! I thought I was all alone out here. Where 'bouts are you? I'm in LaVale. I'm interested to know who you were able to see in Balt? Was it at UMBC? I was told by them to get all the standard tests done locally (since they don't recognize the stool analysis and the gene testing) and to get back in touch. Both my parents carried genes for Glu. Intol. but neither of them was ever diagnosed. My mom suffered terribly with neurological problems (hand tremor) which totally ruined her life. She died scratching from

Derm. Herpetiformis. She had so many immunological ailments. It was so sad. Now my 21 yr. old son is battling hand tremors. He has two identical GI genes which predisose to neuro. problems. My one daughter has migraines, the other has ADHD. All are now adults. But, I am relieved to have been able to figure out what I had, have the testing done, and have my son tested, so that maybe my kids can be spared what my mom went through.

I don't know what Almond milk you had...but Almond Breeze has soy lecithin listed in the ingredients. And, unfortunately, peanuts are one of the most fungus/yeast containing foods out there. I love peanut butter. I eat organic peanut butter which is much lower in pesticides and yeast/fungus, but, I'm even off that until I get straightened out. (Maybe, like me, you have a yeast intolerance). Anyway, nuts are very hard to digest and hard on inflammed intestines. Check your chocolate-- probably had casein (milk protein) in it...found in cocoa butter, and, maybe soy lecithin. I had to give up my favorite dark chocolate as well, because of those ingredients. THIS IS NOT FUN!!!

I pretty much live on anything made of rice. Had to stop the pasta that contained corn flour when my insides flared up. Can't eat raw anything, yet...no raw fruit or veggies. Only bananas cause they're easy to digest. But, at this point, any food causes me to have diarrhea and horrible stomach gurgling. I just put up with it and hope that someday my bowels will again accept my gluten-free, casein-free, corn-free, soy-free, egg-free, & yeast free diet.

So, maybe, you might be interested in joining in a West. MD Celiac/Glut. Intol. Support Group if I see there are enough people out here interested in it??? Link

GFinDC Veteran
GFinDC
Posted

Hey Link,

I am not in Maryland, I'm in DC instead. But you might be interested in checking with the CSA to see if they have any members in the area.

They have a chapter in Maryland but it is in Timonium, quite a ways from you. There are chapters in Virginia and Pennsylvania that might be closer.

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