jewi0008
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Well...I already got my blood tests, BUT the colonoscopy and that stuff isn't until Feb. 26th BUT when I talked to the Dr today he said that because I got the blood tests done I can go back to a gluten-free diet. Is this not correct?!?
No, I do not still get the rash. Around that time in my life I started also getting the painful cracks in the corners of my mouth. I have gotten these up until this point in my life, though never as bad as when I'd first get them?!
Welcome to OP and the other newbies here!jewi - Sounds like your GI is being pretty through testing for Chrons, Celiac and Colitis. The rash could be DH. Or it could be some other sort of rash which may or may not be caused by celiac. It's really hard to say. Do you still get it?
Don't be scared about the blood test results. Remember that if they come back positive, you will have you answer to all your years of suffering and be able to get your health back on track. Also remember that blood tests and scopes are notorious for false negatives so you might want to try the diet regardless of blood test results. But don't go gluten-free before the scope or you'll have a higher likelihood of it coming back negative!
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Speaking of being a "Newbie," I may "officially be a "Newbie" pretty soon. I've been miserable for many years, too...since I was little. Yesterday, finally, I went to a GI for the FIRST TIME EVER. I'm now 25.
They are testing me for: Chrons, Celiac and Colitis. Is this normal...does anyone know?
Also, I got some old medical records in the mail from when I was younger...like High School age. There was a period of about 3-5 years where I see I went in for "rash around my nose," and then "rash on my chin." Weird. Kept coming back. Anyone know what that is/was?!
I'm scared for the blood tests to come back. Feb. 26th I'm having a Colonoscopy and the other one with the tube down the throat.
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From what I have read in various texts it is completely normal to have B vitamin deficiency with celiac. Reason being the intestines can neither absorb or make the B's very well when the villi are flattened and/or scarred. For many this is also a hereditary trait too so you just need to make up for a basic malabsorption problem.
This lack of the B's compounds the difficulty with making use of various other basic nutrients like proteins and carbohydrates...which then wacks out your digestive and nervous systems etc. etc. etc. Even when avoiding gluten you will probably still need to take B complex. I find I have to take the co-enzyme ones since I am allergic to brewers yeast and the other synthetic ones do almost nothing for me.
You will probably also need a bunch of minerals: calcium, vitamin D (I like cod liver oil--some find it hard to digest but it is less so if you have that problem if you also take HCL), magnesium, sea minerals. I find kelp to be a help too.
And then the various enzymes: bromelain/papain and pancreatin.
And do you know...if I'm taking the B Supp right now and they tested my B levels, would they still find I'm deficient? I don't want to mess anything up. I KNOW there is something to be said about the B Vit for me because I'm still eating like crap and taking this supp is the only thing I've added and/or changed and it has already made a HUGE difference.
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I hope so too. I used to do the feel hungry all the time thing too, no mater what I ate. One thing that helped a lot was taking a vitamin B complex, it really took it down by about 15%. So I guess I needed more vitamins! Also, very filling dinner? Pasta alfredo. Lasts me for hours. I have a recipe if you like.
The B complex is VERY interesting to me. I'm eating a lot of wheat/gluten right now so that I can get tested. I have a GI appt on Thursday to see their thoughts. Anyways, been miserable with my stomach, starved and all oral tissues chronically annoyed. I got back on my B Complex last Thursday...I have been significantly better since Saturday? I have a really good B Complex that I get at whole foods. Very high levels and B12 as methylcobalamin. Will taking this vitamin mess with blood tests if they were to test my B levels?!
I feel that I'm highly deficient in B Vitamins. Why?
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I'm so bloated and constipated...my stomach feels huge! What, besides dairy, does everyone do to push it through? I'm going insane!
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Tooth enamel problems are not uncommon in people who've had celiac since they were a child, but didn't know about it. Nutritional deficiencies (even minor ones) can cause the enamel to form improperly.
Ok, so if you have tooth enamel problems, is this what causes the sensitivities? Or what function does the enamel serve? Sorry this is problem such a stupid question, but I honestly don't know! I've been told I am probably nutrient deficient because of my burning mouth and sore internal oral tissues.
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My teeth are horrible!!
It's not fun at all! I was detoxing and my teeth felt fine. Now I've really upped my wheat/gluten usage per day because I'm going to get my Iga and IGg levels checked in less than a month. Since then, teeth in pain. They hurt so bad that they give me a "referred pain" to my tongue. So irritating.
I wonder about that acid reflux. I burp a lot, but I don't really have burning. Sometimes when I burp, though, I litterally have some throw up in my mouth. My throat will burn off and on - but I don't have tonsils and it's not that I'm "sick." How would I know about the acid reflux?
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Help!
My teeth are so sensitive and are killing me right now. They are making my whole mouth hurt and chewing gum makes it worse.
Does anyone else have problems with their teeth/gums?
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Hello, I found this place in thanks to my boyfriend who has been extremely supportive in my gluten struggle.
It all started a year ago (around December '06), I started getting sick badly but it was so little I didn't think much often. However by July '07 things were getting bad. I was in so much pain I would cry. Wake up feeling so sick. My doctor tried different meds but when nothing worked I was sent to the specialist and was scoped in November '07.
The tests came back in mid December that it was highly believed I had Celiac and needed to go gluten free. I knew little to nothing. Most of my meals were bunless burgers I grilled at home. In 2 weeks I felt great. I was cheerful, hanging out with friends, even dancing again. However on new years I got badly ill once more. Everyday it was worse and I layed off the burger and things got better (my boyfriend was eating the same burgers and was fine so maybe they some how got contaminated?).
I write down all that I eat which generally is gluten free chicken breast from walmart as well as other gluten free items some of the stores carry, just to see if I can find any patterns. However even with that, I still get tummy aches. In the past it felt like a certain area hurt but now its like my stomach as a whole. Its not as sharp either just my stomach over all. I also still suffer nausea often and lets just say my bathroom habits are different each day. I also tend to be very burpy too.
Is this normal? I know it differs for everyone, but truth be known I'm still scared over all this as its still new to me.
I work hard to make sure what I eat is gluten free. Personally while it sucks I can't eat what my friends eat, I dont mind it if it means I feel normal and can have fun with them. I miss being my old self who was carefree, I miss hanging out and going to the mall and stuff. I guess the main reason I post here is I would love to hear back from anyone with the same. I know I'm not alone with this. That small time when I felt normal around Christmas was wonderful. It was a small taste of what I want. I'm just curious if others deal with the same when they first started.
Thanks so much for reading this.
Are your stomach problems your only symptom?
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yes, my husband is here. : (
i do not know what it is though! i am trying to 'figure it out,' you know? its such a weird pain i have never felt before.
I'm just wondering if it's making your back hurt, too...and like you want to curl up in a small ball? I've been having a TON of lower left ab pain lately, too. I'm going to get tested in one month. A few months ago I had that pain, spread to my back. I thought I had an ovary cyst...ended up going in immediately. After the ultra sounds, NOTHING. Hmmm??? Celiac?
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I've been "cheating" on my gluten free diet for several months...I've attempted to go gluten free. The past month I have been gluten free. Now, I'm not. I'm miserable and will be finally getting my blood test for Celiac.
My Dr said that a solid 4 weeks of consuming gluten will be good enough to then have the test show accurate results. Is this corrrect?
Also, can someone tell me how long it took to find out your results?
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Can someone help me understand this:
My Dr ordered me IGG and IGA blood tests. But before I got the tests done, I switched jobs. Now, starting Feb 1 I finally have insurance again and can get the tests. I am currently an "unconfimred Celiac." BUT, here is what has been going on.
All of Christmas I was eating normally....wheat, gluten, anything! There were days when my stomach would be messed up, floating stools, just an icky feeling. But then there were days I was ok. Then, January 1-18 I went on a Mild detox. I had no wheat, gluten, unnatural sugar, caffeine, meat, dairy and soy. Lived on fruit, nuts, veggies, healthy fats. My stomach problems went away for the most part.
Fast forward to today. Last Friday-Sunday I went back to eating normally minus the meat. I've eaten some bread and other wheat/gluten, dairy, soy, so on and so on. Sunday-today have been miserable. At least one major bowel at night...with a "pile" of fatty bowel or floaters. Bloating some. VERY gassy and crampy. My mouth hurts, teeth and gums sensitive. In addition, my eyes are twitching and I got 3 canker sores...they are all very small and don't really hurt; nonetheless, they are there.....
My question: If I gave up wheat and gluten for so long and then ate it in a small amount, would it hit me harder than if I were consistently consuming it? I UNDERSTAND that I should not be eating it at all, but are the effects less if you've been eating it on a daily basis?
I'm ready to get tested! I'm miserable and depressed!!!!!
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Can anyone please help to explain to me:
1. What are enterolab tests?
2. What is an IgA test?
3. If I'm not currently consuming wheat/gluten/sugar/dairy/soy/alcohol/caffeine, can I get a certain blood test(s) to help me determine what my body is intolerant to?
Thanks!
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anybody else have it? oral allergy syndrome, it's when fruits, vegetables and nuts bother you because they give you an itchiness in your mouth and throat, sometimes a major swelling....supposedly it can be healed easy and it's popular, but anybody have an experience with it? i never ate fruit, veggies or nuts much because of this, not like it was making me sick at all, just those feelings were real annoying....man, i could live off grapes and honey roasted peanuts so let's hope so going off gluten wouldn't even really bother me if i was able to eat those things like i couldn't before....it'd be something new
I may have it; been trying to figure it out. My mouth is always irritated. Like the sides of my tongue and the sides of the roof of my mouth, but I can't pinpoint what it is? It's so irritating. There is nothing in my mouth or on my tongue or anywhere to be found, but it's a chronic irritation. I don't know if this is OAS?
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I don't have my tonsils...
Interesting. I don't have mine either. My Junior year of college was just plain awful. infection after infection...chronically ill. I had them out. Then I started to develop all sorts of oral problems. And while I never get sick, my throat, too, will hurt and burn.
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For the past month I've had a sore throat off and on. I'm not sick or anything, though I have been sick in the past month. It hurts so bad that I can barely swallow at times, tonight it had me almost in tears. I took a Tylenol and now the pain has subsided to a very bearable level. It makes no sense to me. I went to the doctor this evening and they are totally clueless and have no idea what it could be. He said it didn't look like strep and what I was describing didn't sound like strep. He also said that there are a few small ulcers in my throat, but nothing major and certainly nothing that should be causing all that pain. He thought perhaps I have thrush, but said I didn't have any signs of it. He prescribed an antifungal, but the pharmacy couldn't fill it tonight because they couldn't confirm its gluten free status. Ugh... Anyway, I'm looking for any ideas to mull over. I checked the mayo clinic's symptom checker and of course several different kinds of cancer popped up. Lovely for the holiday stress level. Anyway, I'm trying not to get too worried. If the antifungal doesn't work my doctor is going to send me to an ear nose and throat specialist. I was just hoping to get some ideas of what it could be (other than cancer) to maybe ease my mind a bit. I'm scared. Thanks in advance.
I'm curious...do you still have your tonsils? Or anyone else out there with this sore throat problem..do any of you still have tonsils?
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Question...maybe someone could help me with:
So at the Safeway Grocery Store there is a Nut Bar. At the Nut Bar, you can grind your own peanut butter. So we got honey roasted peanut butter. I had some the other night. The day after I felt so crummy. Achy, no energy, mouth starting to annoy me again...foggy head.
Does anyone know if there is gluten in it? Or what ingredients might be in it that I should not have? Has this happened to anyone else?
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I've found that I consistently get diarrhea within about 6 hours after eating the Whole Foods gluten free sandwich bread. I noticed I was experiencing the problem only after eating sandwiches I had made, and I ruled out other things by throwing out the mayonnaise and using different deli meats and the only common thing that was left was the bread. It only has a few basic ingredients: Nonfat milk, rice flour, tapioca starch, eggs, sugar, canola oil, yeast, salt, xanthan gum, lemon juice.
I've eaten all of these things either alone or in other products and haven't noticed a problem. I did have a slight case of diarrhea Saturday night and I remembered I had tried some of the Whole Foods banana bread that morning which has the following: Banana, rice flour, sugar, butter, eggs, pecans, brown sugar, soy flour, sweet rice flour, cream, baking soda, natural vanilla flavor, salt, xanthan gum, lemon juice.
It comes on quickly when it happens, with cramps. I have to say if I slip and have a bit of regular gluten containing food, such as birthday cake on someone's birthday, I don't get this type of problem. I don't generally have a diarrhea problem even if I eat gluten.
Has anyone else experienced a similar problem with Whole Foods gluten free baked goods? Is it possible I'm just intolerant of the type of yeast they use, for example, but other types of yeast are ok? What about xanthum gum? Can that cause it? I'm just guessing at this point. Thank you in advance for your ideas.
I would guess that it's the xanthan gum, too! However, your body may not be able to handle the eggs or the soy? Those are very common intolerances, too.
I'm curious...do you shop at Whole Foods a lot? I love whole foods and am looking for other great items there!
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Gotta love it! Where else can we discuss this stuff?
Anyone else get this? I'm sitting on the toilet, minding my own business, doing my excremeditation. When the stools come out, they burn! Its like an "I've been eating hot peppers" kinda burn. The stools can be either C or D. Doesn't seem to make any difference in the burn or not.
I don't get this all the time. Maybe a once a month, although it seems to last for a couple of days. I had a colonoscopy back in Sept and everything was normal, except for a mild case of diverticulosis, so there aren't any fissures, hemerroids, or anything like that.
Is it something to be concerned about? Is this part of being GI or do you think there's still something in my diet that needs to be eliminated? I've already cut out gluten, corn, soy, and sugar. I've switched over to raw dairy as opposed to commercial dairy products, although I still cheat a little from time to time (and pay for it). The raw dairy doesn't seem to cause the gastro problems the commercial dairy did. And the commercial dairy (when I do cheat) doesn't seem to be related, due to timing.
Any ideas?
I know EXACTLY what you are talking about! I get this, too...I think when I'm glutened. I cannot trace it...I only know that when I eat badly it happens. Usually it's just for one day...and typically the morning after. It hurts and burns so badly. You are not crazy; it really does happen. I wish someone could tell me what food(s) cause it, too!
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Hi,
I think I may have Celiac disease. I'm supposed to have IBS but now I have been dx'd with a thyroid disorder and I read that Thyroid and Celiac disorders can go hand-in-hand. I also have been dx'd with a vitamin D deficiency, which was a shocker considering that I have been taking multivitamins for 10 yrs and eating healthy to boot.
So has anyone else been dx'd with either thyroid or vitamin deficiencies? I think I am not absorbing the fat soluble vitamins, A, D, E and K. I have found some "dry" forms of vitamins A and E, and sublingual forms of D with K. I know the sublingual will work well, but I'm not sure about the dry A and E. I'm still going to take a small multiple just to get the small stuff.
Susie
Hello Susie! I put up the following post:
Hello!
There have been multiple people on this forum who have various mouth problems, tissue irritations, cracks in the corners of your mouth and canker sores.
I have suffered with this for 3+years. About a month ago I started taking the B Complex in the Vegan form with B12 being methylcobalamin - not cyocobalamin. I am happy to say that 5 of the 7 days in the past week I have been free of mouth problems.
Please see the following links:
Open Original Shared Link
Open Original Shared Link
If anyone else has had a similar experience please let me know!
If you are not currently taking the B Complex, GO GET IT! I got mine from Whole Foods....about $15.00 for 60 capsules. Dosage is 1 or 2/day. I was taking 1/day; I am now upping to 2/day.
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Thanks for letting us know what has at last worked for you. May I suggest that in addition to the oral B's that you are taking add in a sublingual (dissolves under the tongue) B12. Your doctor should have told you to get some the day you were diagnosed. If he had the sores would have most likely been gone in a month rather than 3 years.
I will definitely get the sublingual as well, but I do not have "sores" in my mouth. I just have like a chronic irritation, where it always feels like my teeth are scraping on my tongue, burning mouth, ect.
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Thanks for replying! This pain only makes itself known once in awhile...so far it's never been severe.
As far as dropping dairy....I don't drink milk....it's made me feel sick to my stomach for a few years now....I have noticed since being gluten-free that carefully checked ice cream bothers me....but cheese doesn't. Does that make sense?
Del
Del,
I once had the left side pain so bad that I thought it was my ovaries. I was in the worst pain...after a lot of money spent at the Dr...nothing was found. I believe it was the gluten. I could not even sit my left side hurt so badly!
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Hello!
There have been multiple people on this forum who have various mouth problems, tissue irritations, cracks in the corners of your mouth and canker sores.
I have suffered with this for 3+years. About a month ago I started taking the B Complex in the Vegan form with B12 being methylcobalamin - not cyocobalamin. I am happy to say that 5 of the 7 days in the past week I have been free of mouth problems.
Please see the following links:
Open Original Shared Link
Open Original Shared Link
If anyone else has had a similar experience please let me know!
If you are not currently taking the B Complex, GO GET IT! I got mine from Whole Foods....about $15.00 for 60 capsules. Dosage is 1 or 2/day. I was taking 1/day; I am now upping to 2/day.
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I've had a few mess ups in the past month. 4 times to be exact. First let me say I'm so mad at myself for not being more careful. It's only been 3 months and I guess I gove over confident with the diet.
Every time I get a sensation that starts on my tongue and goes into my throat, kind of tingly. In fact, twice I figured out I was eating gluten food because of this symptom. I looked at the ingredients closer and sure enough something bad was in it. Each time I ended up with a stomach ache, grumbly stomach, gas and some bloating. The other two time I think it was cross contamination. One was a Burger King grilled ceaser salad and the other Doritos chips that are on the safe list.
Does anyone else seem to "taste" it when they get glutened?
Thanks,
Joni
Joni,
Most of my problems are with my mouth. It's just AWFUL and mine never goes away! Does your tongue feel like it's constantly scraping against your teeth? I go insane!!!!!!!!
going off gluten wouldn't even really bother me if i was able to eat those things like i couldn't before....it'd be something new
Help, Is My Girlfriend Having Celiac Disease
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
Kbtoyssni- You said that a symptom is eye twitches? Really? I have never heard that but my eyes for the past several months have NOT STOPPED twitching! It drives me crazy! I feel as though I've had something wrong with me since I developed a rash around my nose when I was about 12 years old. I wonder if the eye twitching is a latent symptom from years and years of continuing to eat gluten?! Thoughts?!