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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.

Researching For 3 Weeks, Think I Have Sibo Or Celiac, But Not All Symptoms :(
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I'm going to try to summarize this to keep ti short - please bear with me.   I haven't had issues consistently for my entire life, but did, as I was gowing up, have a few instances of diagnosed 'COLITIS' 

 

Nothing really was thought about that - and maybe it's normal - I went to the doctor less than 5 times i think forthis particular thing up until I was about 18, but thought I would mention it.

 

Fast forwad to last year.  Severe stomach pains - double you over type pains - but no diarrhea or constipation, just felt like I was hit in the gut with a baseball bat, and I would walk hunched over for a few hours until it would pass.  This was an off and on thing for a few weeks - but each boutonly lasted a few hours.  I saw a surgeon and a gastroenteroligist, and neither of them really did much.  I had an endoscope, but aside from finding polyps in my stomach (not colon) and a very inflamed stomach, nothing.  Dr. prescribed Hycosomine, which I took and hated the side effects - for a few days as that is all I could tolerate.  I think it helped at the time (it was for stomach spasms) - but I just am not sure that is my real issue.  I do notice spasm-y type feelings, but it doesn't seem a cause of the issue so much as a side effect.

 

Now fast forward to about 3 weeks ago.  I had found out I had miscarried again - this is my 3 rd time - and ended up having a D&C, and kind of burying my grief in food.  Junk food. Fast food. yuck.  After a few beef sticks one day, I noticed my stomach was hurting.  I didn't pay much attention, and can't tell you what I ate after that, but the stomach pain progressed and became nearly unbearable. I ended up taking pain killers for 4 days because I couldn't move without being in signficant pain.  It felt like the pain was moving downward - albeit slowly, and moved gradually from my stomach area, down to a few inches above my belly button.  This is where the pain centered last year too.  The pain seems to settle right above the belly button and stay there.  no matter what - ti's ALWAYS tender there.  The tenderness is in varying degrees - can be just if you press on it, or have you doubled over in tears. 

 

 

All this said - i don't have diarrhea or constipation as a rule.  I had one day of diarrhea in 3 weeks, and maybe 2-3 of constipation but I think the latter was because I was eating NO fiber with the stomach pain because I didn't want to aggravate it.  

 

One of the 'attacks' or episodes hit the hardest, when I thought I was getting better, and was HUNGRY (after not eating much with the pain) - and sat down to 2 bowls of generic 'TRIX' cereal with almond milk.  about 30 to 60 minutes later, I was a mess.  Crying and doubled over, and my 5 year old went running crying to my husband, scared to death. 

 

So - researching my fool head off - I am beginning to think I have SIBO - and or possibly Celiac - but I don't have the Diarrhea or Constipation issues.  So I just don't know.  I also am not losing weight. 

 

I am frustrated with my GASTRO because he didn't test for either ofr these and I would think ith my symptoms he should have.  I also have noticed lately (though this is probably unrelated) that my fingers have been very itchy - especially after I have them in cold water.  That seems like mild allergy thing, but it must be food related as nothing soap wise has changed.    Anyone able to help at all with this?  Since I dont' have the diarrhea or constipation - am I way off base?mayb

 

Maybe it is food allergies causing it - I am just so lost :(

 

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After a third miscarriage, your OB should suggest the blood test for Celiac. 

 

Show the OB this list of the most common symptoms.  Not everyone has every symptom. 

 

http://www.cureceliacdisease.org/archives/faq/what-are-some-of-the-symptoms-of-celiac-disease

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First, I just wanted to say that I'm soooooo sorry to hear that you have had to go through all of this.

For years I had abdominal pain above and to either side of my belly button, my one symptom that persisted even after I went gluten free. Mine appears to have been caused by a B12 deficiency (easy to test for, easy to treat) and has gotten much better with supplements. Any levels below 400-500 can have symptoms despite that still being in the accepted normal range in the U.S.

When I was doing research into my pain, there were about 9-10 serious health issues that people had in relation to pain in this area. That list included things like Crohn's disease, diverticulitis, gallbladder disease, pancreatitis, appendicitis, hernias, ovarian cysts, vein issues, endometriosis, and more that I can't remember now, though none of them mentioned stomach polyps.

The bad news is that there are literally hundreds of people posting online about pain in this area who still have no idea what is causing it despite lots of testing, and even some unnecessary surgeries to remove things that aren't diseased.

Though it sounds as if you've already had a lot of testing done, getting a couple more blood tests to rule out a few more possible causes certainly can't hurt. 

Best of luck in finding some answers.


 

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First, I just wanted to say that I'm soooooo sorry to hear that you have had to go through all of this.

For years I had abdominal pain above and to either side of my belly button, my one symptom that persisted even after I went gluten free. Mine appears to have been caused by a B12 deficiency (easy to test for, easy to treat) and has gotten much better with supplements. Any levels below 400-500 can have symptoms despite that still being in the accepted normal range in the U.S.

When I was doing research into my pain, there were about 9-10 serious health issues that people had in relation to pain in this area. That list included things like Crohn's disease, diverticulitis, gallbladder disease, pancreatitis, appendicitis, hernias, ovarian cysts, vein issues, endometriosis, and more that I can't remember now, though none of them mentioned stomach polyps.

The bad news is that there are literally hundreds of people posting online about pain in this area who still have no idea what is causing it despite lots of testing, and even some unnecessary surgeries to remove things that aren't diseased.

Though it sounds as if you've already had a lot of testing done, getting a couple more blood tests to rule out a few more possible causes certainly can't hurt. 

Best of luck in finding some answers.

 

*****

thank you!!  the one thing i remember reading about the duodenum is the type of pain - which is that it comes in waves - I think that was with an ulcer,  That is exactly what happens when I have those attacks.  something about the duodenom releasing foods or foods being released into it. i researched that last year and had a strong suspicion thats what it was.  I still have that - along with Gas, and this the first time I came across SIBO - and I seem to have a large number of the symptoms - and possibly Celiac too but I need to find out.  I am so angry my doctor never tested for this.  Or even suggested it.  One endoscopy and I think he was looking for ulcers, but - I am not sure he even checked the duodenum, so what was the point?  I was under, why not go the extra step and look there?  Now I have to potentially face another procedure becuase he didn't do that - and it makes me mad.  I am sure it won't be cheap, and .. UGH.  why not just check for that stuff while the patient is already on the table.

 

My personal opinion is that the Dr is overbooked and therefore just kind of whips through his patients.  Case in point - it took like 2 weeks ore more if I remember correctly - to even get the results of my endoscope.  ANd when I called on Monday to ask if I had been tested for Celiac or SIBO - or if he DOES those tests, he was out of the office, and I called Tuesday - he hadn't seen the message yet.  I called FRIDAY and still no update (REALLY?)  They called me back late friday to say he doesn't test for those two things.  WHAT A WASTE!  :(

Edited by SearchingForAnswers
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*****

thank you!!  the one thing i remember reading about the duodenum is the type of pain - which is that it comes in waves - I think that was with an ulcer,  That is exactly what happens when I have those attacks.  something about the duodenom releasing foods or foods being released into it. i researched that last year and had a strong suspicion thats what it was.  I still have that - along with Gas, and this the first time I came across SIBO - and I seem to have a large number of the symptoms - and possibly Celiac too but I need to find out.  I am so angry my doctor never tested for this.  Or even suggested it.  One endoscopy and I think he was looking for ulcers, but - I am not sure he even checked the duodenum, so what was the point?  I was under, why not go the extra step and look there?  Now I have to potentially face another procedure becuase he didn't do that - and it makes me mad.  I am sure it won't be cheap, and .. UGH.  why not just check for that stuff while the patient is already on the table.

 

My personal opinion is that the Dr is overbooked and therefore just kind of whips through his patients.  Case in point - it took like 2 weeks ore more if I remember correctly - to even get the results of my endoscope.  ANd when I called on Monday to ask if I had been tested for Celiac or SIBO - or if he DOES those tests, he was out of the office, and I called Tuesday - he hadn't seen the message yet.  I called FRIDAY and still no update (REALLY?)  They called me back late friday to say he doesn't test for those two things.  WHAT A WASTE!  :(

Please find a new doc!  My first GI doc was actually a very nice man who took a lot of time with me.  He was looking for acid reflux issues, but took the time to look for autoimmune diseases (some general test that was elevated and then a specific test for lupus, which was negative).  He was actually LOOKING for other things, but didn't think to do a celiac test of any kind- even after thinking "autoimmune".  I eventually found my way to a younger GI doc who did a second endoscopy and actually checked for celiac. Voila.  I wouldn't have classified myself as being constipated or having D issues either.  Now I know what I thought was normal for me is actually abnormal.  

 

Regardless of all of the above- you shouldn't be waiting that long for test results or feel as though you're badgering your doc for information on YOUR body- something you're PAYING him to do for you.  Find someone else in your area that has some experience with celiac disease and/or SIBO. Do whatever you need to do to make it happen.  In my case, I had to be kind of a B. I don't regret it.

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