Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

celiac?

RebeccaR

Recommended Posts

RebeccaR Rookie
RebeccaR
Posted

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

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 Grand Master
cyclinglady
Posted

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 Grand Master
kareng
Posted

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 Rookie
RebeccaR
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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.  

  • 2 weeks later...
RebeccaR Rookie
RebeccaR
Posted
  • Author

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".

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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 Rookie
RebeccaR
Posted
  • Author

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!!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    2. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    3. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    4. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    5. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.