Rate this topic

Recommended Posts

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...

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Posted (edited)

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A negative ttg test 15 years ago is out of date today.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! :) 

 

 

Edited by GFinDC

Share this post


Link to post
Share on other sites

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:

http://www.cureceliacdisease.org/screening/

 

Share this post


Link to post
Share on other sites

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.  

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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.  

Share this post


Link to post
Share on other sites

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".

Share this post


Link to post
Share on other sites

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!  

Share this post


Link to post
Share on other sites

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!!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
1 1

  • Who's Online   4 Members, 0 Anonymous, 281 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    Ingredients:
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Directions:
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
     
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.

     

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au