Looking For Guidance

[Linnylou]

Good morning all,

I am new to the Celiac board as I have thought for 45 plus years that I had colitis, IBS and Crohn's disease. Yes, I have been "diagnosed" with all of these. I completely stopped seeing specialists in 1993 and was so frustrated that I accepted that feeling bad was "normal".

In 1993, I gave birth to my only child, had a thyroid storm, had joint pain so bad that I could not get out of bed, even though I was only 29 and had no mechanism for injury, had anemia so severe that I could not stay awake. Lab panels showed a sed rate of 140 and an ANA titer of 1:256 and an H&H of 7/22. I was sent to a hematologist who attributed my anemia to being of Middle Eastern Decent, told me that I had just had a baby and that I have Micro Cytic Anemia, told to go away. Sent to a Endocrinologist who reviewed my prior labs but the thyroid levels had returned to normal and did nothing further. Sent to an Orthopedist who took xrays and when there were no fractures, dismisssed me. When those sed rate and weird ANA tests came back I was sent to a Rheumatologist but he told me I had "lupus like symptoms" but not enough to make a clinical diagnosis. All of these things left me feeling like a huge hypochondriac. I have had many endoscopies and colonoscopies, 1966, 1967, 1968 (all confirming ulcerative colitis), 1981 (dx w/ Cronh's), 1996 told I had IBS and reflux) and most recently a colonoscopy in 4/12 due to having abdominal discomfort so bad that death was welcomed- this scope "normal".

Follow up with the doctor had her asking questions, asked questions about my skin, joint pain etc... she asked if I had ever been tested for Celiac Disease. Although I had heard of it, I really did not know what it was and had never been tested. I came home and began looking this condition up and thankfully found this page... I have almost every symptom and am convinced that this is in fact what has been wrong for me for my entire 47 yr life.

I am short statured, about 4 inches shorter than my mom and 9 inches shorter than dad. Every tooth has had cavities, I have almost no dental enamel. I was very small as a child, 25 percentile.

I literally feel so full and "morning sick" when I get up in the morning that more often than not I throw up prior to ingesting anything. I usually have whatever I ate the dinner before come back undigested. This has been going on for decades. For about the last year, I have joint pain so severe that I can't easily walk as it feels like small stones under the balls of my feet. Lifting my arms over my head will make me almost cry because of the pain. I crave carbohydrates and am constantly hungry; I have gained approx 40 pounds in the last year. Severe fatigue and nausea follow me...I have abdominal discomfort that is a 6 or so most every day with migraines as frequent as three days a week. My mood is off, I feel depressed and have severe irritability.

The new doctor was kind and did not make me feel awkward or crazy so I will be going back but the lab work that she did came back mostly normal but I have concerns that the correct tests for Celiac weren

[mushroom]

Welcome to the board, Linnylou.

Yes, it is perfectly possible you could have celiac disease in addition to / rather than the other things you have been diagnosed with. Many of the symptoms overlap to a certain degree, but with Crohn's and ulcerative colitis the joint pain would be unusual, also neurological symptoms such as migraine, anxiety, depression (although we can all get depressed if we are sick for prolonged periods). GERD is common with celiac disease, as is nausea and inflammation.

As for your testing, there was only one celiac test run, the tTG (along with the control total serum IgA to make sure you produce normal quantities (you do). There are other celiac tests that can and should be run. You can be negative on some tests and positive on others, and all you need is one positive. The DGP is the newest and most specific test for celiac, but is not used by many doctors. I think in a case such as yours with such a long complex history of testing and diagnosis I would be inclined to seek out a recognized specialist celiac center to get the best workup possible. Have them review all your previous records and run the additional testing. You did not mention testing for nutrient levels, like B12 and Vitamin D, potassium, magnesium, and thyroid testing. All these would be important to know in celiac disease diagnosis, since it is a disease of malabsorption and thyroid problems (also autoimmune like celiac) often follow along with it.

Seek out the best specialist you can find and I wish you good fortune in finding a sympathetic and knowledgeable person to help you improve your health.

[Linnylou]

Mushroom, thank you for your thoughtful reply. Although I thoroughly read thru most of the posts about not stopping gluten before complete testing has been performed... I am pretty desperate and for the last three days have been completely gluten-free. I mean completely throwing out food, buying things that have no possibility of cross contamination... I will be militant! I have no idea how long it is supposed to take to feel better but for me it has been immediate. I haven't used Aleve in two days, have had little issue with belly upset, total decrease in joint discomfort, I actually have eaten far less because I feel full. Still have loose stools and a lot of cramping but for me this has been almost daily for decades and certainly my norm, I cant wait too see if this improves over time and it is pretty clear to me that this could take months to years.

I am curious as to whether anyone knows if testing will be harder, I spoke to the gastro doctors nurse today and advised her of going gluten-free, I expect to hear from them on Thursday... I suspect that I have had celiac disease since childhood as long as the endoscopy and biopsy occurs soon should it be conclusive? After reading more here in the forum I also mentioned further lab testing, should I request genetic markers?