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

Help Me Make Sense Of This?

kbidarch

Recommended Posts

kbidarch Apprentice
kbidarch
Posted

My 3 year old daughter had a positive blood test for Celiac, which was really an answer to so many questions - or so we thought! She underwent the biopsy on Tuesday. It came back with chronic inflammed esophagus, chronic inflammed stomach, elevated lymphoid aggregates, elevated presense of eosinophils (sp), but NEGATIVE for Celiac Sprue.

Does this mean she does NOT have Celiac? Does this mean she *may* have Celiac, but without enough damage to be detectable? What about the other things - esophagus, stomach, lymphocytes, etc - do they ever go along with Celiac? I was SO hoping for something more definitive today. The Dr wants to simply put her on Axid to treat the inflammation, and see her in 3 months.

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

Celiac.com Sponsor (A8-M):


kbidarch Apprentice
kbidarch
Posted
  • Author

My 3 year old daughter had a positive blood test for Celiac, which was really an answer to so many questions - or so we thought! She underwent the biopsy on Tuesday. It came back with chronic inflammed esophagus, chronic inflammed stomach, elevated lymphoid aggregates, elevated presense of eosinophils (sp), but NEGATIVE for Celiac Sprue.

Does this mean she does NOT have Celiac? Does this mean she *may* have Celiac, but without enough damage to be detectable? What about the other things - esophagus, stomach, lymphocytes, etc - do they ever go along with Celiac? I was SO hoping for something more definitive today. The Dr wants to simply put her on Axid to treat the inflammation, and see her in 3 months.

And for just a bit more info - here are her blood-work numbers:

IGE level - 196 (normal: <128)

Gliadin antibody - IGG antibody - 42 (normal: <17)

IGA levels were normal.

WheatChef Apprentice
WheatChef
Posted

No, Yes and Quite often.

The test can't prove the absence of celiac, only the presence of it. The presence of elevated antibodies in a young child should have been a good indicator to attempt a gluten-free diet but instead the doctor is charging you for drugs. The presence of elevated antibodies along with severe internal-inflammation should have been almost enough for a diagnosis.

Since your daughter already did the blood tests and the biopsies there is no longer any reason for her to continue consuming gluten if you think a gluten-free diet would benefit her (which it certainly sounds like there's a good chance it would). Good luck with the difficult diet adaptation ahead of you two.

ravenwoodglass Mentor
ravenwoodglass
Posted

Now you put the med away and do the diet strictly for a few months. She has a positive blood test and many endoscopic changes that are indicitive of celiac. Whether your doctor knows that the changes are the ones you would see with celiac before the villi are totally destroyed is doubtful. There is also 22 ft of small intestine and the damage can be spotty and easily missed. IMHO you should start the diet for her and also test all other family members.

Roda Rising Star
Roda
Posted

I have had my kids blood tested and they are both negative. If either one of them showed up positive on any one of the bloodwork tests I would not hesitate to put them gluten free based on that. I would have them get an EGD and biopsy too just to rule out other things also. I am blood and biopsy proven celiac, but now that I know more than I did when I was diagnosed, I wouldn't let a negative biopsy keep them gluten free if they needed to.

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
      133,085
    • Most Online (within 30 mins)
      7,748
    kk007
    Newest Member
    kk007
    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.