Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

gluten-free People From Western Md?


Link

Recommended Posts

Link Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



srsssss Newbie

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

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

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.

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    4. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,348
    • Most Online (within 30 mins)
      7,748

    jimiiiii
    Newest Member
    jimiiiii
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.