still on this confusing journey

[kitty4751]

Hi all. Thanks in advance to anyone who reads this long post. I'm a 23 yo female. 

I have had quite the year in terms of health issues. here's a recap, which actually starts senior year in high school:

may 2012 - had horrible bouts of constipation that came out of no where. something I had never experienced before. tested positive tTg IgA = 38.3 where >20 was positive. I also had Gliadin antibodies and EMA tested which were both negative. Important to note: I did not see these test results until this past November! my pediatrician never told me or my mom, I just discovered them in my online portal. 

 october 2015 - still dealing with random periods of horrible constipation. they seemed to correlate with stress. always seemed to have terrible canker sores. History of real bad migraines. Had another tTG IGA test which was now negative. 

March 2016 - had barium follow through xray to see why I am always constipated and irregular. nothing abnormal with this test. 

April 2016 - got seriously injured from running. shin splints that made it impossible for me to even walk to class. was prescribed ridiculous amounts of ibruprofen and naproxen (800mg twice a day) probably the cause of my gastritis

June-August 2016 - shin splits are not healing. doctors run slew of tests to see if I have a malabsorption issue or blood clotting issues, I had positive anti ccp antibodies (this is a rheumatoid arthritis blood marker) and iron deficiency (though not anemic). Another celiac panel was ran and DGP was negative and tTg was BARELY positive: 4 where >=4 was weak positive and >10 strong positive. This time I had an endoscopy which found intestinal metaplasia of the stomach, gastritis and duodenitis. no villi blunting so I was told no celiac. 

September 2016- was prescribed prilosec for the metaplasia. I thought screw it, I'll try eating gluten free for 8 weeks. I felt GREAT. first time in forever that my stools were normal and regular and my stomach was emptying it self in a normal timely manner. Not sure if this was from the diet or the prilosec.

october 2016: had a little ER trip after a night of drinking due to brown colored urine - had high billirubin in urine, was not told what this meant, I'm assuming alcohol poisoning 

November 2016 - Weaned off prilosec. found those strong positive tTG IGA blood lab from high school, freaked out, and demanded I be re tested. Did gluten challenge for 12 weeks until February 2017 and re tested, tTG IGA was negative, B12 was borderline very low, still have iron deficiency and low vitamin D. EMA was never tested. 

summary of symptoms I've had: constipation, stomach takes forever to digest, canker sores, iron deficiency, borderline low B12, low vitamin D, gastritis, migraines, anxiety, tingling numbness and bone pain in lower legs--> possibly due to shin splint injury not healing properly. keratosis pilarsis(chicken skin) on my upper arms which I've had for as long as I can remember. Moodiness --> I can be a real grouch when my insides are bothering me. 

Currently: I feel like crap. My shins aren't healed after a whole year.  I've been prescribed pepcid because my primary suspects the metaplasia/inflammation/ulcers are not healed. I often have pain on my right side abdomen below the rib cage, is something wrong with my liver? am I a hypochondriac at this point? Lately I've been having very fatty oily stools that stick to the toilet bowl. I know this is a sign of malabsorption, heck I lost 3 pounds in 10 days this month, obviously not on purpose! I'm 110 pounds, I'm going to evaporate! My primary told me this week to try  the pepcid along with gluten free and dairy free diet, I am to report back in a month. I'm seeing a rheumatologist next week to sort out the positive anti ccp test, I'm not sure if I should ask to get celiac retested( i know i have to eat gluten for this) and ensure the EMA and DGP are done. I've only had one completely complete panel (in high school) and since then 2 negative ttg iga's and 1 barely positive. What the heck? I just want one day where I'm not worried about how much my stomach is going to hurt. I'm only 23, this has been consuming my life for the past 5 years. 

 

[jasmine24]

I was just diagnosed a little over a month ago, so I'm not sure if I'm the best person to reply, but if I were you I would get the panel redrawn and make sure they include EMA and DGP. 

 

I am a 24 year old female and had a similar (although not nearly as drawn out) situation about a year before my diagnosis. I had been having symptoms for several years with no answer, and went to another primary care doc who wanted to test me. I'm not sure if she ordered the wrong thing by mistake, or didn't know enough about it, but she ordered 1 test-- just the TTG IgG (instead of IgA) and it was positive. I was referred to a GI who said that test wasn't the best one, but he would do a biopsy anyway. It was negative so he said I didn't have celiac. I wish I had asked him to redo the whole panel back then, but I hadn't done enough research at that time. This past December I went to another doctor for the same problems, still trying to find an answer, and my blood work showed anemia and other vitamin deficiencies, so I asked her to run the full celiac panel and I was positive on everything. I went to a different GI to have the biopsy done it was positive (he said he would be very thorough so nothing was missed and took 11 biopsies). 

 

Anyway, long story, but if I had pushed to have all the tests done and found the right doctor, I would have had my diagnosis a year earlier. Keep fighting until you get all the answers you need (and before you give up gluten for good). I've read some posts on this board of people who are only positive on the DGP. Its interesting that you had a high positive before and now its been low or negative, but I would think that has to mean something. 

[cyclinglady]

Are you serious?  You found a sympathetic GI (12/16) who was shocked that you were not handled properly, asked you to do a gluten challenge,  and then did NOT order a complete celiac panel?   

Looks like your options are to:

1.  With your GP or GI's full support, do another challenge and ask in writing for a complete celiac panel.  Why would you go back to a gluten free diet, if your new GI told you you did not have celiac disease?  Do you look at your lab orders?   Maybe you are losing weight and your stomach is hurting due to ulcers or something else?   It can be hard for doctors to diagnose properly when the patient is changing the variables (remember your 5th grade science project?)  

2.  Get another GI consult, from a GI who treats and diagnoses celiac disease. 

3.  If you have been gluten-free for a month, then give up a diagnosis for now.  Follow your GP's advice and go gluten free for a month.   See if you are feeling better, but honestly, it can take a year or longer to recover from some symptoms.  Anemia or iron-Deficieny, with supplements, should resolve within months.  What exactly is your ferritin level?  Those can drop with every monthly cycle.  If you felt great on a gluten free diet, then stay gluten free.  Why is a diagnosis so important to you?  

4.  Follow-up with the Reumatologist as you might not have celiac disease at all, but another AI issue.  A strong TTG could be possibly related to any AI issue.  

I am sorry for all the mis-haps.  I hope you figure it out.  

For those out there struggling for a firm diagnosis -- DO NOT GIVE UP GLUTEN UNTIL ALL TESTING IS COMPLETE!  Keep and maintain your medical records!!!!  Document all requests in writing to your doctors!