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New And Frustrated

wilkjo1

By wilkjo1
in Coping with Celiac Disease

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wilkjo1 Rookie
wilkjo1
Posted

I have to boys who are casein, gluten, soy, and everything else free, so you would think I would be a whiz already with my diagnosis, but no. I have only been at this for myself for two months. I went from creamer to soy milk in my coffee and from my whey protein powder to soy. I am thinking I may have a problem with soy since I am bloated up. The gluten caused esophogeal spasms. The dairy causes that and bloating. I am wondering once you finally figure out all the things that cause something, how long does it take your gut to heal? My boys were metal poisoned and autistic so their issue is a little different. My husband has many IGE allergies as well as the boys. I am clear for IGE, but what a pair my husband and I make. :rolleyes: Any info on how long it will take before I no longer look nine months pregnant while only weighing 105lbs would be appreciated.

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Takala Enthusiast
Takala
Posted

Hi, New and Frustrated, I am Older and Grumpy. I still cannot handle well being outside when it is over 110

daphniela Explorer
daphniela
Posted

I read somewhere that if your intolerant to milk, their is a good possiblity you will be intolerant to soy. I would avoid the soy and stick to coconut and almond milk. Check the labels on the almond milk many of them contain soy.

wilkjo1 Rookie
wilkjo1
Posted
  • Author

Hey guys, thanks so much for responding. I will definetly avoid the soy and see what happens. I am well versed in the gluten free part of the diet and such, because of the boys. We even mill our own flour. I still can't figure out why this all happened. Are you guys hypothyroid as well? What other foods have given you problems?

ang1e0251 Contributor
ang1e0251
Posted

I disagree that just because you are lactose intolerant you also cannot tolerate soy. I've lactose intolerant for 33 years but have used soy daily for many years. If you can't handle soy, but don't assume you can't unless you try it. If you like it like I do, it's a good solution and available in any grocery store.

Many people reported that it takes some time for their bloating to go down. Are you sure you are avoiding dairy completely? Are you getting some sneaky gluten in an unexpected way?

wilkjo1 Rookie
wilkjo1
Posted
  • Author
I disagree that just because you are lactose intolerant you also cannot tolerate soy. I've lactose intolerant for 33 years but have used soy daily for many years. If you can't handle soy, but don't assume you can't unless you try it. If you like it like I do, it's a good solution and available in any grocery store.

Many people reported that it takes some time for their bloating to go down. Are you sure you are avoiding dairy completely? Are you getting some sneaky gluten in an unexpected way?

Hi, Unfortunately since I have stayed away from soy the last four days the bloating is gone. I did like the soy milk a lot. I dropped the dairy shortly after the gluten, because it also caused esophogeal spasms. In the meantime my boys are a lot happier, because Mom is like them just for a little different reason. I am hoping that the dairy is temporary for me. The doc said if my villi heal that I may be able to have the dairy again. From the blogs I have seen, I am not so sure about that. I am going to check into hazelnut milk. Almond milk is ok, but watery. I know if any gluten were getting in my boys would be sick, so I think were ok there. I even changed my make up to gluten free. My boys react through skin absorption and I wasn't sure if I would. How long before your stomach healed?

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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

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      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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