I need an answer from gluten intolerant peeps!

milkyskinn
milkyskinn Posts: 126 Member
in Health and Weight Loss
Alright, so I hope some people who have celiac disease/gluten intolerance can help me out here.

There was a suspicion that I'd be a celiac after running blood tests etc, but even after having tried eating gluten free for MONTHS things only got worse. Actually, looking back, it feels like the gluten free diet brought me into this tiresome cycle of chronic constipation!

It started with throbbing pain on the lower right of my abdomen back then (while gluten damage the small intestine?) and sometimes that still comes back. I'm still tired, I still have headaches, and the constipation over time made everything worse and I bloat very quickly, and recently frequent vomiting (like within 10 minutes after a meal) and nausea has been added to the list as well as weakness in the knees. Before the gluten free diet, I was just having an overly frequent bowel movement, the lower right pain (which made it painful) and insane fatigue. The constipation only gets a bit better when I EAT gluten again.

Has anyone ever been misdiagnosed? A gluten free diet is supposed to make things better, and not worse, over the course of about 5-6 months.
I had absolutely LOADED up on gluten in the month december, and my blood test result which I got back which is from december 28th states that the antibodies in my blood are the lowest they've been since the last time they tested me while I started eating more of them again.

Things that make nausea worse seem to be things high in sugar/simple carbs and yeast, and alcohol makes me instantly lightheaded. Also for the amount I can get myself to eat, my body seems to really overproduce on crap (no pun intended)
I'm quite tired of feeling sick and being dependent on senna tea everyday.

Replies

  • ShannonKelliG
    ShannonKelliG Posts: 70 Member
    Have you had a biopsy done? I would ask to get that done first to make sure it is CD and not something different. I don't know a lot about sienna tea, but from what I've heard/read it's really hard on the intestines. If you already have a damaged intestine from CD, I wouldn't do anything that might be harder on it. I would try eating easier to digest foods, and more whole foods (not processed) to see if that helps.
  • milkyskinn
    milkyskinn Posts: 126 Member
    Have you had a biopsy done? I would ask to get that done first to make sure it is CD and not something different. I don't know a lot about sienna tea, but from what I've heard/red it's really hard on the intestines. If you already have a damaged intestine from CD, I wouldn't do anything that might be harder on it. I would try eating easier to digest foods, and more whole foods (not processed) to see if that helps.

    Yes, I've had it done. There was some damage, but not a lot. I feel a little two-sided on this whole thing as from what I've heard a gluten free diet should definitely makes things better and is more likely to cause diarrhea and not constipation. I also don't experience any cramps or discomfort after eating anything containing wheat. I have gotten very sick once from eating plain cooked chicken breast and bell pepper, and the last time I checked those do not contain gluten!!

    I am ready to believe I am sensitive to it and not overdo it, I just feel there is another underlying problem but the docs aren't willing to expand their horizons to look further, and only focus on the small intestine and some echos.
    My diet has definitely changed to less processed over the past few months, and at this point I'm tired of cutting so much things out (no lactose, no gluten, no pork meat, no nuts, no more instant soups, no rice, no bananas, no eggs...) I feel like I've tried everything!

    I know senna isn't the best thing but it's better than taking a laxative every day or every 2 days. I've had movicol once and tried mitamucil and it only made things worse as well despite drinking more than enough water. I've also tried flax seed, tons of coffee, water, coconut oil, and psyllium husks but they only worked for a few days and then it stopped working. Right now senna, less cabs, and a little more fat in my diet seems to keep things at bay but I can't eat the same things every day in my life even if I wanted to!
  • akaMrsmojo
    akaMrsmojo Posts: 764 Member
    I was misdiagnosed the other way. Are you sure you completely wiped out all gluten? There is so much cross contamination. Plus if you are intolerant to one, good chance you are intolerant to something else. For me, it is lactose.

    I felt better almost instantly. But if I got "glutened' by accident, I was SO much worse than before the gluten free lifestyle.
  • daffodilsoup
    daffodilsoup Posts: 1,972 Member
    I would go to another doctor and have them check you out/do a biopsy. If what you have is celiac disease, then eating a gluten-free diet should stop your stomach issues. If you aren't' getting sick from foods with wheat, what you have is likely not Celiac.

    EDIT: Just to be sure, make sure you have eliminated ALL gluten from your diet. It's in lots of things you wouldn't expect - soy sauce, some types of orange soda, sauces and gravies, etc. Read labels carefully and avoid anything that contains modified food starch.
  • akaMrsmojo
    akaMrsmojo Posts: 764 Member
    One more thing, when I was sick it was never directly after I ate gluten. I would have vomiting episodes for no reason and it could be anytime. Gluten destroys your immune system.
  • milkyskinn
    milkyskinn Posts: 126 Member
    I was misdiagnosed the other way. Are you sure you completely wiped out all gluten? There is so much cross contamination. Plus if you are intolerant to one, good chance you are intolerant to something else. For me, it is lactose.

    I felt better almost instantly. But if I got "glutened' by accident, I was SO much worse than before the gluten free lifestyle.

    When I was on my gluten free diet I checked everything; I bought gluten free soy sauce from my health store, where I also get my gluten free muesli (which I still eat every morning just in case). I made all my marinades by hand so I knew exactly what was in them. I've been tested for lactose twice and I'm not intolerant.

    I've had a breathing test for the lactose too, but because my previous doctor was even more stubborn than my current one, she never properly informed me about it. The nurse taking the breathing test said the numbers only rose toward the end, which indicates bacterial overgrowth/candida, but she refused to discuss it with me...

    haha, this sounds like the opposite! I felt better when I started eating them again. How long did it take you to feel better?
  • Cindym82
    Cindym82 Posts: 1,245 Member
    You do know that gluten is in EVERYTHING, when I mean everything I'm talking body wash, makeup deoderant.....you need to ready every single lable. Dove makes all their products gluten free. If you feel your doc is not treating you for the correct thing please go seek another doc. I was misdiagnosed for hypothyroid and it made my life a living hell. Also, have you had your vitamins checked? CD usually requires you to take suppliments b/c your body will not obsorb vits the same way as a non CD person. I have to take a bunch of suppliments to "feel normal"
  • milkyskinn
    milkyskinn Posts: 126 Member
    I would go to another doctor and have them check you out/do a biopsy. If what you have is celiac disease, then eating a gluten-free diet should stop your stomach issues. If you aren't' getting sick from foods with wheat, what you have is likely not Celiac.

    EDIT: Just to be sure, make sure you have eliminated ALL gluten from your diet. It's in lots of things you wouldn't expect - soy sauce, some types of orange soda, sauces and gravies, etc. Read labels carefully and avoid anything that contains modified food starch.

    Just like in my previous answer
    " I bought gluten free soy sauce from my health store, where I also get my gluten free muesli (which I still eat every morning just in case). I made all my marinades by hand so I knew exactly what was in them." Yes, I'm pretty sure. I checked every label, and it was because of that I also know that gluten can even be in meat and many soups and desserts where there is nothing obvious in it to tell it has gluten. There were even days where all I ate were plain veggies, fruits, nuts and eggs, haha. That was hard.

    I really wonder if I can still go to yet another one since this is the third doctor I'm seeing. But they're all getting the information from the previous doctors I've seen so they're all pretty much stuck in the same findings all the time. :| I'd probably have to go to belgium if I want a second opinion in my case.
  • milkyskinn
    milkyskinn Posts: 126 Member
    You do know that gluten is in EVERYTHING, when I mean everything I'm talking body wash, makeup deoderant.....you need to ready every single lable. Dove makes all their products gluten free. If you feel your doc is not treating you for the correct thing please go seek another doc. I was misdiagnosed for hypothyroid and it made my life a living hell. Also, have you had your vitamins checked? CD usually requires you to take suppliments b/c your body will not obsorb vits the same way as a non CD person. I have to take a bunch of suppliments to "feel normal"

    haha, yes! These days I only get my body wash/cremes and all that jazz from the natural/health stores so there's not as much crap in them as all the big supermarket brands to begin with.
    But wow, misdiagnosed for hypothyroid? I thought that was pretty easy to discover through blood tests, that must've been pretty horrible :(

    The only thing I've been advised is to take additional vitamin D, which I still do. I also take extra calcium, and have recently started taking probiotics again. I've also been given a medicine that is supposed to help me keep my food down... pill fest!
  • ShannonKelliG
    ShannonKelliG Posts: 70 Member
    Could it be crohn's disease or colitis? My sister has uc and is on an even more restrictive diet than I am. I also find when I do get "glutened" and have a flare up I'm more sensitive to all things. I've had to cut out almost all spices since Dec because of a bad flare up.
  • akaMrsmojo
    akaMrsmojo Posts: 764 Member
    I was misdiagnosed the other way. Are you sure you completely wiped out all gluten? There is so much cross contamination. Plus if you are intolerant to one, good chance you are intolerant to something else. For me, it is lactose.

    I felt better almost instantly. But if I got "glutened' by accident, I was SO much worse than before the gluten free lifestyle.

    When I was on my gluten free diet I checked everything; I bought gluten free soy sauce from my health store, where I also get my gluten free muesli (which I still eat every morning just in case). I made all my marinades by hand so I knew exactly what was in them. I've been tested for lactose twice and I'm not intolerant.

    I've had a breathing test for the lactose too, but because my previous doctor was even more stubborn than my current one, she never properly informed me about it. The nurse taking the breathing test said the numbers only rose toward the end, which indicates bacterial overgrowth/candida, but she refused to discuss it with me...

    haha, this sounds like the opposite! I felt better when I started eating them again. How long did it take you to feel better?

    In a week, I lost 10 pounds(of water weight) and I stopped vomiting immediately. My face cleared up and my stomach flattened. The doc did a blood test that came out negative, he did not even know that gluten was in beer. But that was after I had been GF for a year. Turns out, you have to eat it to get a positive test.

    The lactose thing showed up a year later, I started having minor symptoms again and I cut it out. I really do not trust docs much.

    It may be soy. That one is common too.

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