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Newly Diagnosed Celiac- Have Removed Gluten But Still Having The Primary Symptom!
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Hi and thanks for reading this.

I finally had an endoscopy done last month which confirmed that I do have celiac. She sad my intestine was wrecked from it and had to start gluten-free immediately. So of course I have. But my main symptom, lower abdominal distention and pain (not stomach pain, but intestinal pain) continues.

So, I wondering what the hell is going on!

Is it because I'm having an issue with dairy now too? Or because I'm not really strict in the sense of having a gluten-free kitchen- I mean, I can't have my family go gluten-free too. I use the toaster they do...

or, is it the dairy

or, am I having other things that trigger the same response from my body that gluten does? Like does gluten-free steel cut oats not work for me?

And thoughts will be much appreciated.

Thanks!

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If you are using shared condiments, a shared toaster, and other sources of contamination, you are not yet gluten free, and cannot really expect to get better until you go completely gluten free.

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Yes, living in a household where others eat gluten, using a shared toaster, and eating oats can all cause your symptoms. Many of us with celiac cannot tolerate oats regardless of whether or not they are certified as being gluten free. Also, many of us cannot tolerate soy and/or dairy. Sometimes as our autoimmune systems are producing a lot of antibodies, they can mis-identify other foods as containing gluten when they don't.

In the beginning, it's very important to make your household as gluten free as possible and to eat only natural, whole foods. Is there a reason why your household cannot go entirely gluten free? It's easy to do....and it can be a very healthful diet for everyone. Cannot the other members of your household simply consume gluten outside the household? If you eat whole foods, we're only talking about things like bread, pasta, crackers, and desserts that might contain gluten. These can all easily be replaced with gluten-free alternatives. Eating a gluten-free diet isn't like eating "bad" food--really, everyone can enjoy eating a gluten-free diet.

It sounds as though you'r trying to go "gluten light," and, quite frankly, this will not alleviate your symptoms. Please read as much as you can about celiac--I believe you'll begin to understand very soon why your present arrangement can only spell disaster for your recovery.

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You have to be really strict. If you can't get your own toaster then you could try those toaster bags. I don't know that they work because I haven't tried them. Or make your toast on a cookie sheet in the oven.

We got my daughter her own little fridge for condiments and such. We had to because there just wasn't enough room in the big fridge which really isn't all that big.

Hard to say on the oats and dairy. Some people can. Some people can't. But bottom line you need to be really strict.

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I agree with what others have already said. You could pick up an inexpensive toaster for yourself, which would probably be cheaper than buying toaster bags.

Some of us did have to give up dairy for awhile. I'd definitely suggest you do that and hopefully after you have healed, you may be able to successfully incorporate dairy products into your diet. Others have problems with casein, which is in all dairy products, but for now you might want to just give up dairy products to see if you get to feel better.

Personally I didn't consume any oats right away but you could try reintroducing them later (gluten-free oats, that is). A small percentage of us cannot tolerate oats at all.

If you stick to a whole foods diet right away, you'll have a whole lot less labels to read, too. In the meantime you might want to check out the Newbie 101 topic here.

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You cannot use their toaster at all. Period. That right there is probably your issue.

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You cannot use their toaster at all. Period. That right there is probably your issue.

Thanks for all your insights. I guess their is a learning curve when it comes to this. I guess the idea of living so rigidly kinda sucks, and I don't want to do it. I will, because I want to get better- but it sucks. Okay, done feeling sorry for myself.

I am so grateful for this forum. I'm going to read as much as I can and meanwhile, consume meat, veggies, and fruit- only.

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Also, there's a good chance that you won't always be the only gluten free member of the family. Much easier to make the family gluten free after that!

Your doctor should have told you (but most don't) that if YOU are diagnosed, everyone in your family should now get tested, with or without symptoms (because the disease can be doing damage for a while before symptoms develop). And if they test negative, they are supposed to get tested periodically for the rest of their lives, like every 5 years or so, or if they ever develop symptoms.

Your siblings, children, and parents are in a category where 1 in 22 people have this disease. Your aunts/uncles, cousins, and granparents, it's 1 in 56.

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A note to that you may go through some withdrawl symptoms while healing. Any reaction your body makes is a good one. It is a sign of healing to come. How long exactly that it takes to heal depends on many factors.

How long you have been suffering damage.

How completly you avoid gluten.

If you can absorb the nutrients you need.

I believe supplements are important to add nutrition.

If you can stay on your diet regardless of social pressure.

If you can discover other intolerances and avoid them, for as long as it takes.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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