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

No Official Diagnosis, But....

albauer94

Recommended Posts

albauer94 Apprentice
albauer94
Posted

I have had problems most of my life that I now know are symptoms of celiac (IBS, GERD, mouth ulcers, headaches, mystery rashes, infertility, miscarriages, I could keep going but I'll stop).  Anyhow in February I saw a chiropractor/nutritionist because I was totally exhausted and just all around felt like crap.  He suspected it was gut related and ran a organic acid urine test and a celiac HLA DQ screen to check to see if I had the markers because my 13 year old nephew has celiac.  The test came back that I had the DQ8 allele.  He recommended that I start start a gluten free diet at the beginning of March to see if it helps any.  

 

March came and went and I felt much better.  Stomach issues getting better, no brain fog, and I wasn't nearly as exhausted as before.  On April 1 blood test results for my 3 year old son came back positive for celiac.  I resumed a gluten filled diet and called my PCP and requested celiac testing.  Test results were negative but the some of the tests they used were outdated and they only ran IgA, not IgG and didn't test total IgA so I'm still not convinced.  A couple weeks later I called my GI doctor (who I should have called to being with) and told them about a stronger family history (son with positive blood (now blood and biopsy), 1 brother with DH but no biopsy, 1 that can't eat gluten without getting sick but never tested, 1 nephew confirmed celiac-we knew about him for 2 years, and 1 nephew with positive blood test) than a year ago when I had a scope to look for an ulcer or any other reasons for constant hunger feelings and heartburn.  He looked for evidence of flattened villi but didn't see anything but didn't do a biopsy.  

 

Now with the stronger family history, DQ8 gene and positive response to a gluten free diet he said that he would do another scope to do a biopsy but after discussing it with my husband I decided against it, but now I wonder if I have made the right decision or if I should just assume I probably do have it and I'm going gluten free either way so it doesn't matter anyhow.  I have been gluten free for two weeks now after eating anything and everything in April and being sick most of the month.  I don't really want to resume a gluten filled diet just for the sake of a test that wont' make a difference either way.

 

So I guess my question is, are there any benefits to testing as an adult?  Other than knowing you need to stay on a strict diet.  I  don't need a doctor to tell me what I already know. I accidentally glutened myself yesterday eating a chef salad.  Lesson learned, lunch meat isn't always gluten free.

 

 

 

 

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

My husband went gluten-free per the poor advice from my allergist and his GP. He was never tested for celiac disease. Turns out that after being gluten-free For 14 years he feels great! He refuses to do a challenge and I do not blame him. Gluten makes him sick! I was formally diagnosed two years ago. Hubby would be the first to say that I get a lot more support from medical, family and friends. It makes it easier for my kid to be tested as needed. Will it help in in the future? I do not know.

If your doctor could give you the dx by diet, family history and Gene testing, that would be great. If not, then you can be like my hubby and go gluten-free!

albauer94 Apprentice
albauer94
Posted
  • Author

Maybe I will call the GI and make an appointment to talk at the very least.  Maybe he has some compelling reasons to get tested.  At this point, all I really know is eating gluten makes me feel like crap.  The chiropractor I went to pretty much said that regardless of whether I stopped eating now or later, I would most likely develop celiac if I didn't already have it.

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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

      @Jmartes71, Sorry you've been feeling so poorly. Are you taking any medication to treat the SIBO? Are you taking any Benfotiamine? Benfotiamine will help get control of the SIBO. Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks? Carbon Monoxide poisoning...
    2. knitty kitty
      - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States. In European countries, different cooking methods and longer fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat. Gluten content can...
    3. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound...
    4. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals. Dietary changes (low carb/paleo) may be beneficial for you. Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet? It's harder to get all the vitamins needed from a gluten free diet. Gluten containing products are...
    5. Caligirl57
      - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant. I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,084
    • Most Online (within 30 mins)
      7,748
    BlueIcyRose
    Newest Member
    BlueIcyRose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      New issue

      By knitty kitty · Posted

      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      Blood Test for Celiac wheat type matters?

      By knitty kitty · Posted

      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      Severe severe mouth pain

      By trents · Posted

      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      Severe severe mouth pain

      By Caligirl57 · Posted

      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.