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Newly Diagnosed, Need Some Feedback!

Danio

By Danio
in Coping with Celiac Disease

Recommended Posts

Danio Newbie
Danio
Posted

Hey everyone!

My name is Danielle. I am 22 years old and just had the biopsy done to comfirm Celiac disease....I have a couple questions for you guys...Every since i was 2 I must have had Celiac and they just didn't know. I have always had the big stomach and skinny everywhere else....I was wondering...now that I know that I have Celiac and am gluten free (unless I slip unknowingly) when will my stomach go away? Will I ever have a flat stomach again!? I look like I am pregnant! I have been sucking it in for years and years, I look like I have a beer belly and used to get made fun of in Junior high school...Please tell me this will go away....

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glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted

Mine went away...until I have my period or get glutened. :)

11475 Apprentice
11475
Posted

Mine went away too. :) It took only a few weeks of being on a gluten free diet, but I guess it might take a different amount of time for every individual.

Danio Newbie
Danio
Posted
  • Author

Well mine has been this way for years.....I have been gluten free for a little over a month and I havent seen any changes...

I guess it could take longer since I have 20 years of damage....maybe?

GFinDC Veteran
GFinDC
Posted

It can take a varying amount of time, and there is no fixed amount of time anyone can give you. Each of us is different. Some steps that might help are:

Avoid all sugar (feeds bad bacteria that make gas)

Avoid all dairy (many celiacs have lactose intolerance at first)

Take a dairy-free pro-biotic sometimes.

Avoid all processed foods to start. (This makes it simpler to avoid gluten CC).

Maybe try a betaine HCL once a week. (creates extra stomach acid and can help with unwanted bacteria in the stomach.

Try a peppermint tea or Altoids peppermints to relieve stomach gas (makes belching it out easier)

Consider you may have other food intolerances at work if it doesn't resolve on a strictly gluten-free diet in 3 months.

  • 5 months later...
badlass Newbie
badlass
Posted

I'm also new to all of this (including the board, which my wonderful older sister found for me over the weekend!) and am VERY relieved to hear that the tummy can go away! I've struggled with mine for years and it's caused me a lot of heartache, especially since I have anorexia nervosa. my baby belly has always been the bane of my existence and have had people think I was pregnant! I can't wait until this tummy goes back to normal, maybe then my paranoia about people staring at my baby belly will go away and I can get on with my life - as superficial as that sounds, I'm sorry!

eatmeat4good Enthusiast
eatmeat4good
Posted

I too am skinny with a big belly. I find the more protein I eat, the less belly I have. Protein is very healing for us Celiacs. I eat carbs like potatoes and rice very sparingly. Shocked to find I have less belly at 47 with only 7 months gluten free than I have had in my entire life. Also starting to feel stomach muscles growing and I ain't even doin any crunches!

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  • 1 month later...
Danio Newbie
Danio
Posted
  • Author

That is what I have been trying to stick to. Since I have lactose intolerance along with Celiac....meat, fruits and veggies is all I should be eating anyway...just really hard diet to follow.

Then, just a couple months ago I had to get YET ANOTHER biopsy done on my stomach due to it being inflamed which I think was caused by gluten....not really sure....but they told me that my bipsy was almost identical to the last one 6 months ago...that means it hasn't healed at all!! What am I doing wrong and what am I missing!? Ugh....

Danio Newbie
Danio
Posted
  • Author

Also...another question....does being a celiac, give you a bigger chance of being soy intolerant also? Or just lactose?

GFinDC Veteran
GFinDC
Posted

Hi Danio,

Good to see you back after 6 months! I hope things are going well for you. Sounds kinda like they aren't going perfect though.

Did you get your test results from the first biopsy and the 2nd? Not that I am a doctor at all, but you might learn something by studying them yourself and comparing the difference. Celiac is a "do it yourself" kind of disease, you can't count on doctors to "fix" you. There are no pills or surgeries or what-not that make it go away. What makes it better is sticking to a 100% gluten free diet, and finding any secondary food intolerances that might appear in your body. Nutrionists who are celiac savy may give you a starting point but that is all. Most of the work to figure out what is safe for you to eat is up to you.

You are not alone though as the people on this forum are in the same boat and have walked the same path. So stick around and read and ask questions and learn from our mistakes.

As far as other food intolerances go, yes, there are many that can crop up. But you might be the rare case that has none also. Only you can determine that, by testing your own body. You have to live in it, so you might as well learn something about it.

Anyway, welcome back and don't be afraid to ask questions and learn with the rest of us. Celiac can be beneficial if you learn how to take care of your body better.

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    • knitty kitty
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      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
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    • 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

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      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.
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      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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