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TCW

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  1. I am having a tough time. I was diagnosed with severe anemia in November, had a CT scan, colonoscopy and endoscopy which showed inflammation but everything else generally okay. My blood tests were negative for celiac, but the written report for the internal exam said I had inflammation that had been seen in celiac or Crohn's.

    Stomach symptoms up until November had basically been frequent pain and soreness, terrible constipation, and (forever) GERD. The last months before the testing, I had begun having bouts of D. I went gluten-free in February, and shortly thereafter stopped with the constipation that I had had my whole adult life, and had a great deal less body pain, which had always been a problem. I was supposed to "challenge" with gluten but decided against it. Oh, I also get severe inflammation along the inside of my cheeks, near my teeth, and thought it might be allergies (because I have Oral Allergy Syndrome, but that usually affects my tongue instead).

    Symptoms probably 40% better overall, but still having cramping, some diarrhea, "flares" when I can't seem to figure out what has triggered it. (Although I'm starting to see a potential problem with corn -- fresh and chips, not popcorn, oddly.)

    Finally went through Enterolab. Malabsorbtion very high, positive for gluten AND casein, one celiac and one GI gene. Went off dairy about a month ago.

    My symptoms are flaring up like crazy now and I can't figure out why. I'm very careful and though I eat out from time to time, I never cheat and always ask about ingredients. Oddly, before my current flair, which has been three days of cramping, stomach pain and urgent need to BM as soon as I put a bite in my mouth, I've also had knee pain.

    Any thoughts about what to do next? Should I eliminate corn? I'm still eating baked goods (like gluten-free breads) that have milk in them. Is that forbidden?

    Also, before when I had a bad flair up like this, I'd mix up some instant breakfast when I was hungy and it was very soothing and satisfying. Does anyone have a suitable, non-daily, gluten-free replacement option? I sometimes feel like my intestines are swollen during an episode of what may be being "glutened" and miss that instant breakfast option.

    I went back to my GP a month or so ago, and he pretty much blew me off. Last time I checked in with my GI guy, he didn't seem concerned, but now I'm not sure what to do. I'm thinking it's probably inflammation that rears its ugly head sometimes, though I don't know how to control it. I need to stop aggravating it so it will heal, but I don't know how to do that.

    Thoughts? I'm sorry the post is so long.. I greatly appreciate your advice.

    Many thanks.

    BTW I will try to reply, but couldn't figure out how to last time! :)

  2. Hello,

    I went out to breakfast this morning, and ate a veggie/cheese omelet, which I watched them make, and some "country potatoes". I asked about the potatoes, and they said the ingredients were potatoes, onions, oil, peppers and seasoning salt.

    In the middle of breakfast, I needed to use the restroom urgently, but felt okay. Now, four or five hours later, I'm getting really painful stomach cramping, mid-section, like inflammation, and feel really queasy. The only thing I ate in between was some gluten-free (Brown Cow) yogurt.

    I'm assuming the cheese and veggies were fine. I'm just wondering if there could have been something in the seasoning salt?

    Does this sound like a gluten reaction? Would the seasoning salt have possibly done it?

    I've been gluten-free for about 9 weeks now and have had one other (worse) episode like this that I couldn't quite figure out, but also happened after I ate out.

    Thanks! TCW

  3.   aikiducky said:
    The fact that you were feeling better and then suddenly got D again would sound like a glutening to me. The time it takes for a reaction to start after ingesting gluten can vary from just half an hour or so to three days, so it's not impossible.

    You might also want to check what else you have been eating, maybe a product you thought was safe isn't after all. Everybody has those surprises in the beginning...

    It can take a while to get back on track after a glutening, and I've noticed that I get a "flare up" of symptoms about a week after the initial glutening. So I would wait a couple weeks before starting to freak out that it's anything else.

    Pauliina

    Hi Paulina,

    Thanks! That's what I was wondering. I've been really careful, but I'm just figuring this out, so...I'm a little better-- still kind of crampy after 5 days. I was thinking of keeping a food diary for awhile to see any patterns.

    Btw, I still haven't quite figured out how this forum works, so I could find any response 'til now. Sorry for the delay! I appreciate your thoughts!

    TVS

  4.   moldlady said:
    gI've only recently gone off of gluten (7 weeks now), and just realized that all communion wafers have wheat in them. :huh:

    What does everyone else do? :(

    ML

    If it's helpful, Here's the scoop: "low gluten alter breads" have 0.01 percent gluten content. You can order at 1 800 223-2772. You purchase them for your church to use for you.

  5. Hi everyone,

    I have been gluten-free for about six weeks now, after a diagnosis of "subclinical gluten intolerance" (suspicious biopsy through endoscopy, and negative blood work). I was skeptical re: the diagnosis, but have been MUCH better since gluten-free. (No constipation or diarrhea, no cramping, sleeping for the first time in years, less dry skin...) I figured I was fine and had my solution.

    Earlier in the week, I started getting an uncomfortable full feeling. Wednesday I had terrible, urgent watery D (didn't even make it to the restroom) and have been crampy with intermittent episodes ever since. (It's Saturday night.) I've also had body aches and headache, but the stomach pain is the twisting sort that I'd been having prior to going gluten-free. The only think I can think of, is I had some pastrami of unknown origin on Sunday last week. I wonder if that could be it?

    But could it take that long for symptoms to hit and would it be so hard for so long? What do you guys think? Also, I had started B complex (Whole Foods) and probiotics (365 WF brand) late last week, too. I've since stopped those. I was already taking iron for anemia.

    Thoughts?

    I'm trying to figure it our because now I'm freaking out and worried that it may be Crohns or something else. I had had an endoscopy and colonoscopy prior to diagnosis.

    Thank you!

  6. Hello,

    I've been very careful gluten free for almost a month now, and made the mistake yesterday of being out for an extended period of time without safe food to eat. I've noticed that I get REALLY hungry, when I'm hungry -- almost like a sudden dip in blood sugar. Anyhow, I was at a Starbucks, and looked through all their ingredients for menu items and the only thing that didn't list wheat was chocolate cheesecake. (VERY sweet.) I got it and started kind of wolfing it down, and within three bites I was overcome by nausea and almost got sick. I thought it was because it was way too sweet and I really needed substantial food, but I suddenly realized it had a cookie crust. (Strange thing to overlook when I've been so careful!) I only had a couple of bites, but there you go. Today I have stomach pain, slight nausea and reflux for the first time in about two weeks.

    Do you think that reaction could have been from the gluten in the crust? Would the reaction make my stomach upset even tonight? I had a biopsy that "suggested" celiac and a negative blood test, but my doctor believes I have "subclinical gluten intolerance."

    Thank you.

    P.S. Can anyone recommend a good pizza crust?

  7. Thank you to those who responded to my questions about "subclinical gluten intolerance". I appreciated the definition of subclinical and had also thought that my doctor was trying to use his head over just lab results.

    I had never thought about possibly having to try cutting out things like soy and dairy. I'm already using lactose-free milk, which seems to be working out okay. It makes sense, though, that if I'm having trouble with lactose I should probably check dairy related ingredients on the food lists, huh?

    I'm not sure if this is the right place to respond to you guys since this is my first time in a forum like this. Does this seem right?

    Thanks again for your thoughts!

  8.   Ursa Major said:
    I am not sure if there is such a thing as 'subclinical celiac disease'. You may just have celiac disease, which hasn't progressed to the stage of destroyed villi yet (but starts out with inflammation). Which would also explain the negative blood work.

    It is very likely that you will have to eliminate dairy and soy as well as gluten in order to feel better. Give it a try, it might make the difference.

    Dairy and/or soy could be causing that inflammation as well, possibly not gluten. So, in a few months, you might want to first try eating gluten for a day. If you react, you know you shouldn't have it. After a week (to make sure you don't miss a delayed reaction) you try dairy, and then soy.

    Try the gluten-free, dairy and soy free diet for a couple of weeks, and if you are still no better, you may have other intolerances and need to do a real elimination diet.

  9. Hello,

    I've never posted before and I hope I'm doing it right!

    I've had lots of stomach problems for a very long time, and within the last year or so have become anemic. I recently found I was very anemic and had a colonoscopy and endoscopy. My doctor found inflammation that he said was suggestive of crohn's or celiac disease. He tested my blood for celiac, but I tested negative. He said he believes I have subclinical gluten intolerance and should go off of gluten for now with the intention of reintroducing at some point in the future to see what the difference is.

    Have you heard of "subclinical gluten intolerance"? Is it the same as celiac? I've just started the diet (about a week) and I am still having some serious stomach discomfort. (Although I'm just learning about things like cross-contamination, etc., so I'm not sure I'm fully gluten-free yet!)

    How long do does it usually take to find a difference in symptoms? Also, I've heard intestinal damage actually takes a long time to heal, so do you just have "flare-ups" periodically, even if you are gluten-free?

    (BTW: I have low thyroid and tend to get headaches and fibromyalgia-like inflammation.)

    Thank you!!! I'm so confused and grateful to have found this group!

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