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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Discomfort And Pain And Ugh.
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4 posts in this topic

I've never been diagnosed with a gluten allergy, at least, not positively. I went to the doctors a few years ago and got tested for a gluten allergy, and it was negative. But, the symptoms were definitely there (bloating, discomfort, gas, diarrhea, constipation, breathing trouble, and heart racing) every time I ate some sort of bread, or something with wheat in it. I felt immediately better when I came off it a few years ago. In the last year, it has crept into my diet... Not daily, but every few weeks, I'd have a sauce that was wheat thickened etc.

 

I've been gluten free officially for four weeks. Actually, I've been grain-free, minus the gluten free bean flour I used three weeks ago to thicken a sauce. Other than that, I've eliminated all gluten and grain from my life, including cupboards, fridge, house etc. The closest I get to bread is walking past it in the supermarket!

 

But, week four, and I'm still feeling terrible. I'm passing a lot of mucus in my stool (visible, and floating around in the toilet bowl), and my stool sort of has a furry/flaky consistency (I'm sorry, guys - it's probably gotta be pretty ordinary reading about other people's poop!). Sometimes I suddenly have a huge desperation to go - like, I can bearly hang on. Then, when I'm actually on the toilet, it all passes out with little pushing (it's not liquid, just flaky and furry). The other night, it felt like my skin was restricting me (I have no other way to describe it). I've also begun to feel pulsating in my lower abdomen, around the same area.

 

Now, I know I should go to my doctor. I really should. But after that appointment mentioned above, it's just discouraged me and left me feeling pretty helpless. If not gluten or grain, then what? My doctor didn't give me anything inclusive to work with, or test for other allergies. She just smiled, told me to up the leafy greens and yoghurt, and sent me on my merry way.

 

I went to my naturopath two months ago, and she gave me some powder to heal my intestinal tract. I take that daily. I have explained my symptoms in the past with her, and she said it was most likely celiacs. She explained the hair like things in my intestine that flatten when gluten is consumed, so that powder was to restore them. I've used it in the past with no difficulties. (She was actually the one who suggested going grain and gluten free completely for 2014).

 

I'm wondering if anyone has any direction, or similar experiences? I know it takes a full year to properly recover from gluten damage and a few months to get gluten out of my system completely. I'm actually wondering if it could be IBS (Irritable Bowel Syndrome) or a lactose intolerance (I don't eat huge amounts of dairy, but will have milk something for breakfast, and maybe a bit of cheese on my salad; I don't "notice" an affect afterwards). My friend even thought it could be Crohn's Disease, but surely I'd notice more symptoms, other than in my bowels. I haven't lost any rapid weight (in fact, I'm probably about 20lbs overweight).

I just so dread the doctors when dealing with allergies - sometimes I feel like a number rather than a patient.

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I wonder if you shouldn't continue to eat gluten and see an MD to get tested for Celiac.  Celiac isn't an allergy.   Maybe an actual medical diagnosis would help you stay gluten free?

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As Karen said, celiac disease is not an allergy (immunoglobulin E based) but an autoimmune disease (Immunoglobulin A and G) triggered by an intolerance to gluten. You definitely sound like you have an intolerance to gluten, whether it is celiac disease (where the intestines are damaged) or non-celiac gluten intolerance (NCGI) can't be told until you do testing while eating a gluten filled diet.

 

The tests that indicate that damage is being attempted against your intestines (and celiac disease) are:

tTG IgG and tTG iGA 

DGP IgG and DGP IgA

EMA IgA

total serum IgA

 

Negative tests but a positive response to the gluten-free diet will indicate NCGI, which feels just as terrible. All tests will eventually become negative on a gluten-free diet. A 2 month gluten challenge of two slices of bread per day is usually advised before testing is done; if you decide to get tested you may not require the full gluten challenge length since you have only been gluten-free a month. Infact, you should probably get tested immediately because there is a chance that antibody levels are still lingering high enough for a diagnosis (if you have celiac disease that is).

 

IBS is more of a description of symptoms rather than a dignosis. Most celiacs have irritable bowels but the cause is celiac disease. For others IBS can be caused by other factors. Does that make sense?

 

Lactose intolerance is found in 50% of celiacs at the time of diagnosis. Lactase, which is the enzyme that digests milk sugar (lactose) is made on the intestinal villi. When celiacs have damaged villi, they can't make lactase until they are healed - in most that will take 6 months or so although a minority can never comfortably consume dairy again without taking a lactase pill first.  

 

I would encourage you to give up dairy for 6 months and then try it again.

 

You could still be recovering, my BM's were still changing one year in, or it could be other food intolerances, or even gluten still slipping into your diet. A food journal that records symptoms as well will help you to pin point any cc or problem foods... But you just may need to give it more time.

 

Best wishes with whatever you decide to do.

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I've never been diagnosed with a gluten allergy, at least, not positively. I went to the doctors a few years ago and got tested for a gluten allergy, and it was negative. But, the symptoms were definitely there (bloating, discomfort, gas, diarrhea, constipation, breathing trouble, and heart racing) every time I ate some sort of bread, or something with wheat in it. I felt immediately better when I came off it a few years ago. In the last year, it has crept into my diet... Not daily, but every few weeks, I'd have a sauce that was wheat thickened etc.

 

I've been gluten free officially for four weeks. Actually, I've been grain-free, minus the gluten free bean flour I used three weeks ago to thicken a sauce. Other than that, I've eliminated all gluten and grain from my life, including cupboards, fridge, house etc. The closest I get to bread is walking past it in the supermarket!

 

But, week four, and I'm still feeling terrible. I'm passing a lot of mucus in my stool (visible, and floating around in the toilet bowl), and my stool sort of has a furry/flaky consistency (I'm sorry, guys - it's probably gotta be pretty ordinary reading about other people's poop!). Sometimes I suddenly have a huge desperation to go - like, I can bearly hang on. Then, when I'm actually on the toilet, it all passes out with little pushing (it's not liquid, just flaky and furry). The other night, it felt like my skin was restricting me (I have no other way to describe it). I've also begun to feel pulsating in my lower abdomen, around the same area.

 

Now, I know I should go to my doctor. I really should. But after that appointment mentioned above, it's just discouraged me and left me feeling pretty helpless. If not gluten or grain, then what? My doctor didn't give me anything inclusive to work with, or test for other allergies. She just smiled, told me to up the leafy greens and yoghurt, and sent me on my merry way.

 

I went to my naturopath two months ago, and she gave me some powder to heal my intestinal tract. I take that daily. I have explained my symptoms in the past with her, and she said it was most likely celiacs. She explained the hair like things in my intestine that flatten when gluten is consumed, so that powder was to restore them. I've used it in the past with no difficulties. (She was actually the one who suggested going grain and gluten free completely for 2014).

 

I'm wondering if anyone has any direction, or similar experiences? I know it takes a full year to properly recover from gluten damage and a few months to get gluten out of my system completely. I'm actually wondering if it could be IBS (Irritable Bowel Syndrome) or a lactose intolerance (I don't eat huge amounts of dairy, but will have milk something for breakfast, and maybe a bit of cheese on my salad; I don't "notice" an affect afterwards). My friend even thought it could be Crohn's Disease, but surely I'd notice more symptoms, other than in my bowels. I haven't lost any rapid weight (in fact, I'm probably about 20lbs overweight).

I just so dread the doctors when dealing with allergies - sometimes I feel like a number rather than a patient.

I was admitted into the hospital when the doctors did not know what is was due to the rapid heart rate.  After four trips to the ER feeling like I was having a heart attack, they finally took it serious.  My symptoms started with heart racing, palpitations, sweating, etc.  Problem was, 24 hours after I would feel fine.  I was discharged with stomach flu and since I have an underlying heart condition anyway, the doctors said it was my heart fighting off the flu.  Anyhow, long story short, I finally went to a stomach doc to see about the extreme indegestion and vomiting I was having.  He did a scope looking for an Ulcer and found that my lower intestine and Villi were damaged.  He had a blood test to confirm.  Have you done a scope?  That is, from what I was told, the only way to truly find out. I was told years ago I had IBS, but finally 2 months ago when I started having the heart issues and so on, it was my body shutting down from the malabsorbtion and anemia.  I lost probably 12-15 pounds in a few weeks time.

 

Celiacs is not an allergy, have you asked your doctor for the Celiacs Panel?  That is what my doctor did to confirm by biopsy. 

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    • Thank you all for replying. It's good to know that it's not just me. It gives me (and hopefully the other noobs) some comfort to know that it's normal for the ups and downs to happen. I keep trying to tell myself to be patient with it but it's so hard to be able to look down the road further than the moment when you're in the middle of it. I forgot to mention, yeah, I have had a full vitamin, mineral, and general blood panel done and everything came back normal. Regardless I still supplement with a good (and expensive) multivitamin plus sublingual D3 and B12 every day, and naturally I scrutinize the labels on those and everything else for anything even non-gluten that sounds fishy, including the possibility of CC at the factory. I guess it will just take longer to stabilize.
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