celiac?

[RebeccaR]

Hi, hoping for advice. I am a woman early 50's who is generally healthy and active. However, I have had 25 years of various health problems most of which have not had a satisfactory diagnosis. I am lactose intolerant (that one was easy).Chronic microcytic anemia that does not respond to iron therapy (including two intravenous iron therapies) , but not thalassemia trait, and normal numbers of red cells. A bleeding disorder (prolonged clotting time and excessive menstrual bleeding). Food allergies-shellfish, bananas, undercooked fish. Joint pain especially in the hips and lower back in the last ten years. Periods of anxiety/depression (now on Wellbutrin) and fatigue that come and go. Gastroesophogeal reflux treated with pantoprazole. Very low blood pressure (have to be careful standing up). My brother had Chrohns disease and died of a cancer of the small intestine at age 48. His son-my nephew-also has Chrohns. My other brother has psoriatic arthritis and our father had juvenile diabetes and rheumatoid arthritis. My 23andme results show heterozygous for HLADQ2.2 (I think I got that right...).  I am normal weight. No skin symptoms. Have had two bouts of unexplained pancreatitis that resolved by themselves. Have had digestive problems off and on through life-mostly urgent needs to defecate especially right after breakfast that makes me late for work because I can't leave home until I've gone, but only rarely diarrhea. SOme days have 6-8 bowel movements with mucus but other days are fine. Definitely tend towards being gassy but usually blamed this on having milk that I wasn't aware of.  I had a negative anti-transglutaminase test about 15 years ago but have not had other tests  or biopsies, except had a normal colonoscopy after my brother died 6 years ago.  My doctor has all this info but because of the negative anti-tGA says it can't be celiac. Should I just try a gluten free diet, and if I do would the anemia and reflux maybe clear up, and how long would it take?  Thanks for any advice and sorry for the long post...

[GFinDC]

Hi Rebecca,

A negative ttg test 15 years ago is out of date today.  If your doc won't run a full celiac panel on you, try and find one who will.  The ttg-IgA is just one of several antibody tests that should be done.  Please find a doctor who know more about celiac disease.  What you describe are pretty classic symptoms IMHO.   If you search for celiac groups in your area you might find a doctor recommendation from them.  There is also a doctor section on this forum that might help.

You should keep eating gluten until all testing is completed.  Testing is usually a blood antibodies test first (the celiac disease panel) and then an endoscopy later.  A gastroenterologist is generally the person that does the endoscopy and it cans sometimes take a few months to get an appointment.

Welcome to the forum Rebecca!  

 

 

[cyclinglady]

Push for the complete panel.  If my GI had not ordered the complete panel (TTG, EMA, DGP), my diagnosis would have been missed.  I test positive to only the DGP IgA, even in follow-up testing.  The TTG is good, but does not catch all celiacs.  If you are at risk, celiac testing should be done every few years or sooner if symptoms warrant.  It can develop at anytime in your life!  

Learn more:

Open Original Shared Link

 

[kareng]

I agree with the others.  Just because your test wasn't negative 15 years ago, means nothing today! It would be like going in with a terrible sore throat and the doctor saying it can't be strep throat because 15 years ago the test was negative.  

[RebeccaR]

Thanks for your replies! I didn't know much about celiac until I listened to a podcast last week that said that people with celiac could have easy bruising,  other food intolerances, other autoimmune diseases, reflux etc. I only knew about the anemia and my doc just accepted that I would always have a microcitic anemia and low hemoglobin. I should correct that I am intolerant to shellfish and uncooked bananas (bad stomach issues) not allergic, but am allergic (sneezing/asthma) to cats and other animals and to dust. I will go back and get another blood test. Mine was in 2004 done by a hematologist that I saw because my ferritin was so low I needed an iron infusion. I have seen him a few times since then including for a second iron infusion and he never suggested getting another celiac test. Also saw a gastroenterologist after my brother died and he didn't mention celiac either. Now that I look into celiac more I see that there are so many other symptoms not just diarrhea or weight loss-I don't have either of these so didn't think about gluten.  Hope its not too late.

[cyclinglady]

It is never too late.  

Anemia was my symptom when I was diagnosed.  Not only was my ferritin habitually low (blamed on menstruation), I also have a genetic anemia.  So, two different types of anemia.    Who knew?  (Thank goodness my GI was up to speed when I went in for a colonoscopy (yep, I am over 50 ?).  Doctors can be so misinformed.  Do they not take time  to read their “cliff note type” medical subscriptions? Maybe not as they spend Much of their time documenting charts now.  No time to have a life and keep up on medical training.  Our GP now has Google glasses.  He has a medical transcriber in India who documents everything.  So, it is like two people are in the room with you.  Our doctor says it has freed up two hours of patient/research time, so well worth the cost.  

[RebeccaR]

So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".

[cyclinglady]

Good for you for trying to manage your health.  My only suggestion would be to find another doctor.  Obviously, he does not even follow standard recommendations for screening.  I would worry that he overlooks other things too.  It never hurts to get a second opinion.  Second opinions have saved my family from unwanted surgeries and incorrect treatment.  

The IgA (Immunoglobulin A) Test, in the case of celiac disease testing,  is a control test.  If he had ordered it, you would have known if the results are valid or not.  Now you are left in diagnostic Limboland.  Again, my TTG was negative it has never been positive even in follow-up testing.  

You can go gluten free for life.  My hubby did that 17 years ago some 12 years prior to my diagnosis (per the advice of his GP and my my allergist).  But he will be the first to tell you that I get way more support from family, friends and medical.

I wish you well!  

[RebeccaR]

I just saw your profile says thalassemia. My doc blames part of the microcytic anemia on thalassemia trait even though all my thalassemia gene tests have come back negative (and I don't have the right ethnic background).

In a way I am hoping it is a FODMAP (carbohydrate) sensitivity instead of a gluten allergy because at least with the FODMAP you just have to stay low FODMAP and don't have to worry about crumbs and gluten cross-contamination like with celiac. I will check back in in 6 months once I see whether there are specific foods I can't eat or if it really does come down to gluten  Thanks for your support!!