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tigger61

By tigger61
in Coping with Celiac Disease

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tigger61 Newbie
tigger61
Posted

Hi Everybody,

I am sitting here feeling kind of strange and hoping someone can help with this...I am having some trouble with my stomach in the upper area of the left side abs, it feels like something is trying to pass thru the area and can't. Has anybody else ever had this happen to them before and what can you do about it? I have only been gluten free since Jan 06 for the most part it has been pretty good but I also have IBS to make things ever more fun...I am not sure if I should try to eat something to maybe help or will that make it worse?

Also has anyone lost weight? I am down 23lbs so far and by DH is getting worried about the weight lose,he has been great throughout all of the problems that I have had trying to cope with everything but one thing he does is he is always saying your not eating enough and I eat what I can. I am very lucky to have him and my son they also have gone gluten free with me to help. I'm sorry I am just carrying on.

Any suggestions would be of a great help.

Thank-You,

Tigger61

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BRUMI1968 Collaborator
BRUMI1968
Posted

Hi. I don't know what to say about the stomach problems...my stomach problems usually are more like feeling green, or feeling like my stomach is full of air...I don't relate right away to your description.

The weight loss thing, on the other hand, is something I'm struggling with. Okay, it's fun to a point, but when is it going to stop? I'm 5 foot 8-1/2 and was weighing about 130 pounds, which is about 10 pounds less than I weighed when I ate wheat two years ago. Now I weigh 125. What's freaky is that I lose about 1/8-1/4 pound every day for a few days...so I've become obsessed about weighing myself every morning. The days I don't poop (they still happen now and again), I stay the same. But if I poop, I lose the weight.

So I started trying to see how much I was eating. Yesterday I felt like I ate a lot, but it was all low cal stuff. I don't eat grains, dairy, beans, soy, or sugar...so basically I eat some meats (new after 15 years of veggie-ism), veggies, some fruits (low on glycemic index - trying to fight off yeast), nuts and seeds, oil, and eggs. It's hard to get a lot of calories this way. I feel awesome most of the time - full of energy like never before - but I just bought a size 26 pair of jeans. I'm 37 years old - size 26 is CRAZY!!!! Well, at least for me. (Admittedly, it was fun jeans shopping for the first time since high school.)

I am going to have to sit down and do some math and try to come up with some ways to manage this. Especially since I want to start exercising more and I don't dare lose more weight if I do that. Maybe when I start exercising, my appetite will get better (it's fine now) and it'll work itself out.

Good luck with your tummy. I know my tummy is loads better w/o the gluten, but we all have to work out the kinks as we go along I guess.

dionnek Enthusiast
dionnek
Posted

yes, I have these pains (feels like someone is stabbing a knife in my left side) all the time. I've only been gluten-free for 2 months now, and they had gone away initially but today they came back. Don't know if it is a symptom of being "glutened" or not, since I still don't feel "normal" yet and don't know when I am accidentaly glutened. I've mentioned this to my dr(s) (I have gone through 9 dr's to finally get diagnosed with celiac) and none of them seem concerned, so I just live with it. Sorry this doesn't help - I had read on here that some people have gall bladder pains, which sounds similar, but that is on the right side, and my pains are always on the left.

lorka150 Collaborator
lorka150
Posted

tigger - from the day of diagnosis i went gluten-free. for about 4.5 months, one product slipped into my diet daily (i didn't know), and i lost about 45lbs. I was extremely tiny, and in the hospital - two doctors had told me I was going to die. I was on the toilet about seventeen times a day. No exaggeration.

One day, i checked a food and realized there it was - sneaky little devil! I removed it immediately, gained 10lbs in two weeks (and kept going up), and realized my mistake. Please check your products.

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    • knitty kitty
      High DGP-A with normal IGA

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      @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 😅
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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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