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Going gluten-free

chrissy

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chrissy Collaborator
chrissy
Posted

i finally took the plunge and have gone gluten free with my kids. today is day 4 for me. i don't know about my meds yet, though. i still have to call and check on them. i would love it if going gluten-free could make enough of a difference that i could quit taking alot of my meds. i wish i could say that i was miraculously feeling better already, but time will tell.

christine

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Rusla Enthusiast
Rusla
Posted

I am sure you are on the right step. Are you the one with the stubborn son? If so, has he come around yet?

Becky6 Enthusiast
Becky6
Posted

I started to notice little things after a few days. Like after 2 days I realized that my stomach was a lot quieter than usual. And within 2 weeks I could not believe how badly my stomach had hurt everyday! My neuropathy took 2-3 weeks to subside a bit as well as for the joint pain. I hope this is the answer to you feeling better!!

penguin Community Regular
penguin
Posted

It's a lot like a toothache, you don't realize how much it hurts until it's gone...

...and then you do something dumb and it reminds you that, dangit that hurt! :rolleyes:

celiacsmom Rookie
celiacsmom
Posted

Good for you! You can do it & I'm sure you'll be feeling great soon!

chrissy Collaborator
chrissy
Posted
  • Author

yep, i'm the one with the stubborn son. once i get my family in the celiac study, he is willing to get tested since it won't be costing him anything.

christine

heli Newbie
heli
Posted

Most meds are gluten free these days, however many are bound with cornstarch and corn is in the same grass family as wheat, barley, rye. I personally have a huge reaction to all corn products. But to encourage you, over about 14 months I was able to eliminate all 12 daily medications.

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2Boys4Me Enthusiast
2Boys4Me
Posted
yep, i'm the one with the stubborn son. once i get my family in the celiac study, he is willing to get tested since it won't be costing him anything.

christine

What study? Can you give us more info?

chrissy Collaborator
chrissy
Posted
  • Author

it is a study on celiac at the university of california, irvine. it is open to families with 2 or more members diagnosed with celiac or DH by either biopsy, positive Ttg, EMA, or positive skin biopsy. i found a link to the study from a post on this board----but i can't remember who posted it, or what the thread was about. the woman i have been in contact with is maryam mousavi. they will do antibody testing and gene testing on our immediate family, and, if i understood correctly, they will test other family members that show symptoms. we have 4 older children that have not been tested yet, so it will be great to be able to not have to "convince" them to go pay to test for a disease they may or may not have. if you live in utah or california, they will have someone come to your home to draw blood. we live in idaho, so they will send us a kit to take to our hospital or dr's office to have blood drawn. kevin and i both come from larger families, and our children are "your's, mine, and our's" so i will be interested to see which of us (or both) carry the gene for celiac. our 3 children with celiac are children we have had together. another interesting thing that might come in to play-------when i was looking at some geneology, i discovered that quite a few generations back, (in germany) our family lines cross. weird, huh?----especially since he was born in idaho and i was born in louisiana---what are the chances?!

christine

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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