Possible Celiac Diagnosis?

[Salohcin]

21 year old male, healthy as a bird untill about three - four months ago, which from the current day of writing has been a roller coaster of mystery diagnosis. I started to develop very sharp, uncomfortable abdominal pain and bloating that was followed by sever fatigue, chills and bad constipation. It got so bad to a point that the pain and bloating were so crippling I could not move. I was in a shopping mall at the time, and I was stuck sitting on a bench grasping my stomach as I was unable to move and had to wait for this "attack" to be done. That night, I awoke at around 2 in the morning with simlair pain, but followed with chills, dizziness and nausea. I decided to check myself into the ER thinking it was my appendix, to which I had various blood tests and urine tests performed which all came back normal. A nurse performed a rectal exam, which she found that there was alot of dried stool and recommended that I take laxatives, noting that it is likely constipation which should go away with more fluids and medication.

Fast forward around a month later, and I am still plagued with these symptoms of pain, fatigue and rectal pain the odd time, but now the main difference is my joints feel as if they are swollen and I tire so easily. My bowel movements are normal (1-2 times a day) with no constipation to date since than, but everything else remains. Again, with another sever attack of crippling pain and symptoms, I made a second trip to the ER and got the whole works done - ct scan, ultrasound, blood and urine tests - and nothing, everything appeared normal or "good news" as the doctor put it. The only thing worth noting is that they spotted small packets or sacks of fluid around my intestines, but assure me that it is nothing to worry about. Unable to really answer my questions on what was affecting me, he pointed me in the direction of Irritable Bowel Syndrome.

After being completely left in the dark to what was affecting me, and having no where to go, I toughed it out and took a trip to visit friends that live in Europe. Strangely, I never had any flare ups there except one incident. A few days after coming back, I was revisited by the same old illness. I opted to a visit to a doctor who practices at the clinic I have been going to since a child, and told him I wanted complete blood tests done for any autoimmune disorders and gluten, as around this time I have begun doing some research into my symptoms. I am aware of autoimmune disorders running in my family, such as Hashimoto's (thyroid), lupus, and stomach cancer, which one of my family members is in critical condition with. He immeditaely accused me of making up my symptoms, "playing the guitar" as he named it, and was hesitant on wanting these tests performed. For him, it was simply lactose and constipation. I do suffer from lactose intolerance, but keep it out of my diet and no longer suffer from constipation.

After negotiation, I managed to convince him to write up the specified tests and for me to see a specialist in the fall. Now to more recent weeks, I still have the same symptoms, but now get frequent headaches, tingling sensations in my hands and soreness in my knees, chest pains, and a feeling of fullness in my stomach. With more "attacks", I felt as if I wanted to collapse due to exhaustion with bad gas, bloating and stomach pain. In these instances I just lie down and fall asleep to calm it down. I have gotten my test results back with everything checking out normal except for the gluten test, which the doctor referred to as "borderline".

Copy of my results is as followed:

Gluten Sensitivity Panel
Endomysial Ab IgA - Reflex testing could not be performed on the submitted specimen. Please recollect and submit.

Tissue Transglutaminase Antibody
t Transglutaminase Ab Iga  21.0*              0-14.9 U/ml

He ordered a re-test and I am currently awaiting the results. To everyone out there on this forum, do these symptoms seem familiar? Any recommendations on things to try or other tests? Thank you for reading my short little story guys, hoping to find some answers soon!

[cyclinglady]

Borderline? That is like saying you are just borderline pregnant!

Your TTG was positive. He should run the complete celiac panel if he wants to retest. If positive, you should be referred to a GI doctor. What am I saying? It was positive!

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Like you, I was barely positve on just one of the tests and it was the DPG IGA, the rest were negative yet my intestinal biopsies revealed moderate to severe damage (Marsh Stage IIIB).

Keep eating gluten until all testing is complete!

Welcome to the forum and let us know how it goes!

[Salohcin]

Thank you for your response and welcome cyclinglady! I must admit I find the whole "borderline" diagnosis clunky, but I suppose he wants to make double sure. I think I will take your advise and try to take the complete celiac panel but at another clinic. The specialist I have been arranged to meet is a GI, but not until October which worries me as I don't want any un-reversible damge to occur in that time.

[cyclinglady]

Just keep eating gluten! After the second round of blood tests, you can decide whether or not you can wait until October for the GI. You can always call to check for cancellations to see if you could get in earlier.

Still...that ttg was positive!

[nvsmom]

I agree.  Generally a positive is a positive. The tTG IgA is about 95% specific to celiac disease, which means you have a 5% of it being a false positive... Realistically your chances are lower because the false positives are usualy very weakly negative (like a 15.2 and not 30% above the upper normal limit like yours is).  Plus those false positives are caused by something else like diabetes, thyroiditis, liver disease, crohn's, colitis, or a serious infection.  A body generally doe not attack the intestines without a reason, right?    ... Sometimes I wonder why doctors are so skittish of celiac disease.

 

Get the other tests done and I'm guessing you could end up with another positive.  Keep eating gluten in the 2-3 months prior to any blood tests or you could get falsey negative tests.  Good luck!

[Salohcin]

Today I will be making an appointment for the complete Celiac panel cyclinglady mentioned above asap, printing it out and bringing it with me into the clinic for accurate reference. I have not eliminated gluten from my diet in the past months, as I must admit this has taken me a little by surprise so I should be good. Thank you for your input guys, I feel like I am in good hands here

With my research I seem to see the same recurring themes of doctors being hesitant or lacking knowledge in celiac disease... doctors can be a strange lot
Has anyone encountered the same symptoms I have? It seems like celiac disease can almost affect your enitre body and can be different from person to person...

[nvsmom]

I'm similar.  I got a lot of joint pain that would flare-up with a sore throat and mouth sores, fatigue, hair loss, and even postural hypotension.  I would get the sudden pain, lasting 3-20 seconds, but it was usually when my intestines were trying to prepare for a BM. I was constipated my entire life without realizing it because I usually went every day.  I just didn't realize that pellets or logs were abnormal.  LOL 

 

Good luck with the doctor.  This report discusses the celiac disease tests and how reliable the tTG IgA is: Open Original Shared Link It may be a good one to bring the doctor.

[shiffy k]

Your symptoms sounds so familiar. I had numbness, abdominal pain, hair loss, tingling in my hands, feet, and face, weakness, fatigue, nausea, and vomiting. The list goes on and on. I am recently diagnosed, but I know your pain. I literally thought that I was dying several times. I was persistent and requested second opinion from an urgent care clinic who wrote me a referral to see a gastroenterologist due to my primary cares reluctance. I got a biopsy then he confirmed the positive biopsy with blood work.I wish you the best of luck. Keep us updated.

[Ryan7194]

Hi,

Your story sounds so similar to mine. Abdominal pain, bloating, nausea and fatigue. I too ended up in hospital with stomach pain so bad I thought my appendix was about to burst. Was told everything was fine after all the tests and ultimately diagnosed with IBS. 4 years passed by of being sick before I went to a new specialist who ran all the right tests and confirmed celiac. 1 month in I have slight improvement but know there is a long way to go given 4 years of damage being done. I hope you get your answers soon

[Salohcin]

Hey guys, update regarding my visit to the new clinic on Friday. After finally meeting with the nurse practitioner and telling her my story and test results, she was reluctant on giving me the additional Celiac panel tests. She explained that the ttg test is conclusive/accurate enough. I asked about the whole "borderline" diagnosis, which she says can be possible if a person is just gluten sensitive, but said my test results were a definite positive for the disease. She advised me that since I had already gone for my retest that I should start a gluten free diet immediately, and about a month or a few weeks before my appointment with the GI I should start eating gluten again for the "scope". She told me it would be highly unlikely that the retest would come back negative or that it could be a fluke, and said that I made a good move starting to delve into the Celiac community, doing research, etc. Any additional thoughts?

Went shopping yesterday to pretty much do an entire gluten free overhaul of my diet, which doesn't seem like it will be too difficult - only nasty hidden ingredients.

@shiffy k and Ryan7194

Thank you for your support and stories guys - Hope the both of you are doing well!

[nvsmom]

I hope you start feeling well soon.

[shiffy k]

Hope for a speedy heal for you as well! =)

[Salohcin]

Thanks guys! Tomorrow I will call to see if my retest results are back from the lab - I am curious to see what those are.

[Salohcin]

Just got my re-test results in today:

Gluten Sensitivity Panel

Endomysial Ab IgA - Positive (1:10)

Tissue Transglutaminase Antibody
t Transglutaminase Ab IgA  22.5*              0-14.9 U/ml

I suppose these tests speak for themselves... the doctor is sending word to the GI specialist to perform a colonoscopy and endoscopic biopsy. Its going to be an interesting journey from here on out

[nvsmom]

A positive EMA IgA?  That's a sure thing.  I'm glad you know for sure.  

 

Don't go gluten-free until after the endoscopy. You'll need 2-4 weeks of gluten for that.  And make sure they take at least 6 samples so yout risk of a (confusing) false negative biopsy is reduced.

 

It is a journey but you'll do okay once you settle in. I promise.  

[Salohcin]

Thank you so much nvsmom - it is a journey that I am ready to accept
I have done so much research these past weeks, and I am glad there are so much resources available on the web, such as blogs and forums like these. I hope this thread will serve as a tool to others that share similar symptoms, to urge them to get tested.

I have already started the diet and have noticed a difference, but 2-3 weeks before my "procedures" I will eat little bits of gluten each day.