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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Allergy? Looking For Help/advice!
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3 posts in this topic

Hello everyone, I hope its ok to post this here, and I apologise in advance for the length of this, I hope someone takes the time to read it all and help me or give me some advice!

My name is Ben, and I have just turned 22, for the past year and a half I have had a constant pain in my stomach/belly, it never goes away or eases up, it stays there all day, all night, not a minute of relief.

I went to the doctors and had urine/blood tests done, I'm not diabetic, I then spent 8 months on medication for stomach ulcers, they did nothing so I had the test where a camera is inserted down your throat, I am all clear of ulcers.

my doctor then sent me on my way with the words "There is nothing left it could be"

I later returned and was told it could be IBS, however I don't have any of the symptoms apart from stomach pain, however the doctor said with IBS the pain is only present for a short amount of time, but mine never goes.

They don't seem to understand that my life has come to a stand still, I have done nothing for the last year as I am just in pain all the time, and it makes you feel very fatigued.

I Recently switched to a gluten free diet in hopes that this could be the cause, I felt no difference, 2 weeks on the diet go by and I eat some bread that is not gluten free, and I suddenly notice the pain has increased, so I think the pain is slowly going, but its so slow i don't notice until i eat something that sets it off.

I have been gluten free for 5 weeks now, however I have had the odd gluten meal when I have been stuck out etc...

I still have discomfort in my belly while on the gluten free diet, but its no longer a huge pain, but its not 100% gone..

So basically i wanted to know if anyone has had a similer expericance to this?, am I on the right track? how long did it take for your pain to clear after starting a gluten free diet?

what steps can I take to solving this?

I hope someone can help me, im sorry if this is posted in the wrong place <3

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Welcome to the board. Benn.  :)

 

It sounds like gluten could be an issue for you - I think you are on the right track.  However, you might want to consider being tested for celiac disease before you go gluten-free.  Eating gluten-free will eventually cause all celiac tests to show a negative result once the autoimmune reaction finally stops.  To get a positive test, you must be eating gluten (equivalent of 1-2 slices of bread per day) in the 8-12 weeks prior to blood testing.

 

The blood tests you want are:

 

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

You can also have an endoscopic biopsy done to look for the intestinal villi damage caused by celiac disease.  It only requires a 2-4 week gluten challenge.

 

If you are not going to test for celiac disease, and you still want to determine if gluten is a problem for you, then you will have to tighten up your diet to 100% gluten-free.  Right now it sounds like you are eating "gluten-lite"; in order to reap the benefits of the gluten-free diet (if gluten is a problem for you) you will need to be totally gluten-free.  No cheats, check all labels, recheck your spices, sauces and cooking supplies, get rid of contaminated foods (like sugar that had a flour coated measuring cup dipped into it), and check your kitchen tools for cracked and scrathed items that could have gluten in it.... The toaster has to go too.

 

Once gluten-free, keeping a symptoms and food journal will help you keep track of changing symptoms.  Some of my symptoms were very slow to change so being able to look back and compare really helped me.

 

I had some symptoms that improved in the first week. A few more got better in the first month, and most were gone within the first 9 months.  I still have some symptoms that I'm hoping will disappear after 2 years gluten-free.  LOL  Generally, I advise people to give the diet close to 6 months before you judge it's effectiveness.  Prior to that, a bit of backsliding is common so waiting longer to judge is a good idea.

 

Also, about half of all celiacs are lactose intolerant before starting the gluten-free diet. Eventually many celiacs regain the ability to tolerate milk, once the villi which make lactase heal, but in the mean time, lactose intolerance can cause quite a bad pain.  Perhaps it is something else to consider.

 

L-glutamine can help with faster healing too.... That's my only trick.  

 

Good luck with whatever you decide to do.  Let us know how it goes!

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My abdominal pain was actually a B12 deficiency. It wasn't constant, but the pain could be bad for months at a time. The nerves in your digestive system are the first to act up if you're low on B12. And if you get tested, definitely get a copy of the results. The U.S. range for normal goes much lower than some other countries and symptoms can occur at levels that still fall within the normal range. U.S. low = 200. Japan's low = 500. My lab results came back with a notice that symptoms can appear at levels below 400.

But that is the only idea I have for what could be causing the pain because that is what caused my pain. There are a ton of things that can go wrong in the digestive system so I'd keep looking answers. I personally abhor the term IBS because it basically means the doctor gave up trying to figure things out. 

Vitamin and mineral deficiencies are easy to test for, just a blood draw and aren't that expensive so I'd start there.

But if you do turn up being deficient in something - then you have to start asking why, and gluten intolerance is on that list. When they run the tests, if you have multiple deficiencies, it can also lead you in one direction or another as to possible causes because some combinations are more common for some health issues. I'd also note that just going gluten-free is not enough to correct vitamin deficiencies. You need to do more than wait to heal and eat well to correct many of them. I'm not a fan of supplements, but they can be a necessary evil.

Also, if you check back, describing the pain a little might help people come up with other ideas. For instance, cramping could mean a different problem than bloating. And where the pain is, left/right, top/bottom can mean different things as well.

Gluten intolerance generally means bloating and either constipation or diarrhea or both, though lots of people add on a few additional symptoms as well. Fructose intolerance is known for cramping and diarrhea. All-over pain and feeling as if you have hard knots in your intestines and sometimes shooting pain the spleen would be how I would describe my B12 symptoms.

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