Could These Symptoms Be Celiac?

[JT09]

I will attempt to keep this brief but I would love some input from my fellow sufferers

For about a year not I have had all the classic symptoms of celiac

- Diarrhea

- Constipation (only when I dont have diarrhea)

- Bloating

- Terrible rumbling noises in my stomach

- Mouth sores and recently the insides of my cheeks started peeling off (I switched to Sensodyne toothpaste and this seems to have fixed that problem- but I had been using Crest for like my whole life with no problems until recently)

- Abdominal pain, especially in the mornings - this is sometimes relieved a bit after going to the bathroom but not always

- Nausea

- Frequent episodes of getting hot, chills and almost passing out (especially early in the morning)

- Recently my stools have been floating and have mucous (gross even for me to admit and im a nurse)

- Frequent itchy skin

-Menstrual period that was MIA for like 4 months (and no I was not with-child)

- Platelet and WBC counts that have been falling over the last few years

- At one point my eosinophils were off the chart, but have since come back down - no reason why for either

However I have had some not to classic symptoms and I am curious if anyone with Celiac has had problems with other foods besides gluten, especially before getting the disease under control... I have found that dairy totally bloats me (and I know this is common pre diagnosis) but I sometimes have issues with beans and coffee and sometimes get symptoms when I dont even eat any dairy, gluten or beans... before going on a strict gluten free diet is it common for other foods to trigger symptoms?

I have had the celiac antibody test done (it came back negative but I had only been eating very tiny amounts of gluten if any for 3 weeks prior to that), had the wonderful colonoscopy which was negative, no recent endoscopy b/c my GI doc thought there was no point with a negative celiac antibody test (this was before I knew much about this stuff, have had a negative SIBO test, no bugs found in my poo and to be honest I may have had a few other tests done and forgot about them. In the end I got an antispasmotic from my GI (that constipates the heck out of me) and a diagnosis of IBS...

I have added gluten and dairy back into my diet (been miserable) and just got my blood drawn today for a CBC and celiac antibody to check platelets and WBC's. I asked my doc to thrown another celiac antibody test in there just for fun.. so we will see in a few days.

After all this ranting, heres my questions for you experts out there:

- Anyone have a story similar to this? If so what have you figured out thus far?

- If my celiac panel comes back negative (Im not sure what he ordered since I didnt talk to him - I just went to the lab) What else would you guys reccommend getting drawn before I go completely gluten free? Or doing for that matter?

Thanks for taking the time to read my sob story!!

Much love fellow bathroom dwellers

[squirmingitch]

Yes, these symptoms could very well be celiac. Yes, many celiacs have or develop other food intolerances b/c of the damage to the gut. Many times these food intolerances resolve eventually once the gut heals. Celiacs also are notoriously known to have problems with soy & that may never resolve.

First, the celiac panel returns close to a 30% false negative. Second, you were very gluten light for 3 weeks before the testing --- that can return false negatives. The recommendations are that you continue eating gluten for 2 to 3 full months at the rate of 2-4 slices of bread per day. Third, most doctors don't do the full celiac panel. Here is the current FULL celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

You should get a copy of your previous tests & post them here & make sure you post the reference ranges. There are those on this board who are very good at reading them. That applies to the test results of this latest celiac panel.

The eating gluten rules also apply to the endoscopy. A MINIMUM of 5 biopsies should be taken.

A colonoscopy can NOT dx celiac as the colonoscopy is the large bowel not the small intestine. Only an ENDOSCOPY can do that & you must have numerous biopsies.

[Mnicole1981]

Your symptoms are exactly like mine and I recently got the IBS diagnosis. I too tested negative for Celiac disease. I am afraid to try to add gluten back into my diet. How have you felt since adding it back?

[GottaSki]

I had many of the same symptoms as you when I was diagnosed with Celiac - after going gluten free in 2009 I had many other food intolerances become apparent - took a long time and a very strict elimination diet to weed them all out.

First things first though -- a negative celiac panel does not rule out Celiac.

My original celiac panel came back barely positive at age 42. My celiac was confirmed by endo - biopsies all indicated celiac along with VERY severe damage to my villi, etc.

My three children and two grandchildren's celiac tests all came back negative, so I had genetic test done which revealed that all my children carry at least one celiac gene. They have all gone gluten free during the past three years and ALL have had improved health - each had different health problems that were improved after going gluten-free.

Long way of saying we aren't real confident of celiac blood tests in our family

If your next round of blood does not reveal Celiac and -- You may want to push for the endoscopy because it can confirm celiac -- if you have the endo, make sure the doctor is familiar with celiac and takes enough samples. That being said, even endoscopic results can be false negative. If all is negative, I would still highly suggest going gluten free to monitor for improved symptoms.

For me, I am certain that many years of undiagnosed celiac destroyed my gut which led to all the other food intolerances.

Hang in there - Good Luck!

[JT09]

Mnicole - I have felt terrible after adding gluten back in! - Like we are talking terrible pains and frequently almost passing out. Its not a good time

I am still waiting on my celiac panel to come back but apparently my platelets keep falling... have those of you diagnosed with Celiac had this problem until you got your symptoms under control?

[bossley]

Yes, these symptoms could very well be celiac. Yes, many celiacs have or develop other food intolerances b/c of the damage to the gut. Many times these food intolerances resolve eventually once the gut heals. Celiacs also are notoriously known to have problems with soy & that may never resolve.

First, the celiac panel returns close to a 30% false negative. Second, you were very gluten light for 3 weeks before the testing --- that can return false negatives. The recommendations are that you continue eating gluten for 2 to 3 full months at the rate of 2-4 slices of bread per day. Third, most doctors don't do the full celiac panel. Here is the current FULL celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

You should get a copy of your previous tests & post them here & make sure you post the reference ranges. There are those on this board who are very good at reading them. That applies to the test results of this latest celiac panel.

The eating gluten rules also apply to the endoscopy. A MINIMUM of 5 biopsies should be taken.

A colonoscopy can NOT dx celiac as the colonoscopy is the large bowel not the small intestine. Only an ENDOSCOPY can do that & you must have numerous biopsies.

I need a doctor in muskegon,mi Are there any? Where do I look,I'm new to this

[Darn210]

I need a doctor in muskegon,mi Are there any? Where do I look,I'm new to this

First, I suggest that you open a thread in the "Doctors" forum putting your location in thread title something like "Doc needed in . . . "

Second, check for a local support group . . . I just did a quick google search and a facebook link came up. Something to check out. See if the support group may have a recommendation for a local celiac savy GI.