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

Daughters Test Results- Celiacs?

shrty331

Recommended Posts

shrty331 Newbie
shrty331
Posted

My daughter had a biopsy done and the results say:

Duodenum, bulb, mucosal biopsy

-moderate infiltration of surface epithilium by lymphocytes and focal damage to epithelial cells.

-Focal infiltration of surface and lamina propria by neutrophils.

NOTE. the doudenal bulb sections show normal architecture but are inflamed. No clinical information was provided so clinical correlation by the endoscopist is required.

She also tested positive for Endomysial IGA. And her stomaches have lessened with a gluten free diet.

Is that enough to say Celiacs? Her doctor says no. She wants to give her omeprazole for a month and repeat the biopsy in three months with my daughter returning to a gluten full diet next month. I don't want her to have to go through all this again.

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

Is this the same gasto doc as also did not diagnose your six year old son ?

MitziG Enthusiast
MitziG
Posted

Your doctor is a dope. She has celiac, it just hasn't done severe damage to the villi yet, or the doctor didn't take enough biopsy samples. With positive EMA alone she should be diagnosed, and the biopsy is really more of a formality. It clearly shows celiac activity in the early stages. I would NOT do omeprazole- it caused a lot of problems for my little guy when he was on it prior to being dx. I would go gluten-free and see if the doctor will dx based on bloodwork and a positive response to the diet. Plus- being gluten-free should make the ema test negative down the road, which will also be proof.

shrty331 Newbie
shrty331
Posted
  • Author

Is this the same gasto doc as also did not diagnose your six year old son ?

Yep... same doctor. The sons new doctor says he could be gluten intolerant, so he's been gluten free for the past few weeks. I am going to make an appt for my daughter with the new doc now that I know I'm not crazy for thinking the doctor is wrong.

shrty331 Newbie
shrty331
Posted
  • Author

Your doctor is a dope. She has celiac, it just hasn't done severe damage to the villi yet, or the doctor didn't take enough biopsy samples. With positive EMA alone she should be diagnosed, and the biopsy is really more of a formality. It clearly shows celiac activity in the early stages. I would NOT do omeprazole- it caused a lot of problems for my little guy when he was on it prior to being dx. I would go gluten-free and see if the doctor will dx based on bloodwork and a positive response to the diet. Plus- being gluten-free should make the ema test negative down the road, which will also be proof.

Thank you for your response. I am making an appt with my sons gastro before we start the drug or change her diet. She has had a good response to being gluten free for the past few weeks. Was really dreading having to gluten her on purpose. I feel better hearing from someone else that it is probably celiacs.

  • 1 month later...
shrty331 Newbie
shrty331
Posted
  • Author

Ok, so wanted to add an update and see what everyone thinks now.... She saw my son's gastro, who asked us to send her pathology to his hospital to review. They reviewed it and the report says:

"Duodenum, bulb, biopsy:

Benign small intestinal mucosa with moderate villous flattening and mild to moderate epithelial inflammation. (See comment)

Comment:

The epithial inflammation consists of mild to moderate increase in lymphocytes, together with focal neutrophils. Changes seen could represent nospecific duodenitis, but also could be consistent with mild to moderate celiac sprue in the appropriate clinical/serologic setting. "

She also had the genetic test done and her results are:

HLA-DQ2 Negative

HLA-DQ8 Negative

HLA-DQA1* 02

HLA-DQA1* 04

HLA-DQB1* 0202

HLA-DQB1* 0402

The doctor seemed to really be leaning towards Celiacs when he got the biopsy because she also had elevated antibodies and a good response to the diet, but is now saying it's definitely not Celiacs because she lacks the gene... She is gluten free already and has been for a few months now and is feeling much better. Not sure if I should continue fighting to get the diagnosis, or just move on and stick with Gluten Intolerance.

Thanks for your time!

GottaSki Mentor
GottaSki
Posted

Much of the information out there says that the difference between Gluten Intolerance and Celiac Disease is the type of damage done to the small intestine by gluten.

Your daughter's damage sure sounds like Celiac Disease to me - yet it is confusing that she doesn't have the genes for Celiac Disease - hmm

Is there a reason you need to have a firm Celiac Dx? If she has improved on gluten-free diet, has antibodies and has confirmed damage to her intestine, isn't that enough to stay gluten-free?

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

Ok, so wanted to add an update and see what everyone thinks now.... She saw my son's gastro, who asked us to send her pathology to his hospital to review. They reviewed it and the report says:

"Duodenum, bulb, biopsy:

Benign small intestinal mucosa with moderate villous flattening and mild to moderate epithelial inflammation. (See comment)

Comment:

The epithial inflammation consists of mild to moderate increase in lymphocytes, together with focal neutrophils. Changes seen could represent nospecific duodenitis, but also could be consistent with mild to moderate celiac sprue in the appropriate clinical/serologic setting. "

She also had the genetic test done and her results are:

HLA-DQ2 Negative

HLA-DQ8 Negative

HLA-DQA1* 02

HLA-DQA1* 04

HLA-DQB1* 0202

HLA-DQB1* 0402

The doctor seemed to really be leaning towards Celiacs when he got the biopsy because she also had elevated antibodies and a good response to the diet, but is now saying it's definitely not Celiacs because she lacks the gene... She is gluten free already and has been for a few months now and is feeling much better. Not sure if I should continue fighting to get the diagnosis, or just move on and stick with Gluten Intolerance.

Thanks for your time!

Your doctor is just plain wrong and is putting the gene tests above the results of the biopsy. Your daughter has celiac so definitely keep her gluten-free.

Any possibility you can find another doctor? I certainly wouldn't trust this one.

(I bolded the comments in the biopsy report that confirm celiac.)

MitziG Enthusiast
MitziG
Posted

Yep, doc isn't clued into the latest info. The "usual" celiac genes are not the ONLY ones responsible for celiac. You can have celiac without them. The positive antibodies + biopsy= celiac. Period.

sa1937 Community Regular
sa1937
Posted

I might also add that a number of us here (myself included) are blood and biopsy confirmed as having celiac...yet we have no clue what genes we have.

justlisa Apprentice
justlisa
Posted

Personally, I believe that some day they're going to "discover" that the "required" genes are nothing more than genes which show a predisposition to celiac... I, also, believe that far more people are not dx because of this...folks who never "find out" what's wrong with them.

The tests, imo, are just not good enough... It's like the scientific community just accepted these methods and stopped looking to improve upon them.

Also (probably 100 years from now), I believe they just might figure out that systemic inflammation and autoimmune responses are responsible for a whole host of new symptoms/diseases (hypertension, diabetes, etc, etc, etc)...

Just my gut feeling (pun intended)...

sa1937 Community Regular
sa1937
Posted

Even today the gene tests are not at all diagnostic. There are people with the genes who do not get celiac although there's certainly a predisposition which may never be triggered. There is so much more to learn.

shrty331 Newbie
shrty331
Posted
  • Author

Much of the information out there says that the difference between Gluten Intolerance and Celiac Disease is the type of damage done to the small intestine by gluten.

Your daughter's damage sure sounds like Celiac Disease to me - yet it is confusing that she doesn't have the genes for Celiac Disease - hmm

Is there a reason you need to have a firm Celiac Dx? If she has improved on gluten-free diet, has antibodies and has confirmed damage to her intestine, isn't that enough to stay gluten-free?

We don't really need the Dx, I just feel like she has it, we've had all the tests and I just need someone with MD after their name to look at all of the results and say "Yep, It's Celiac."

She is going to remain gluten free. Even at 9 she knows if she eats gluten it's going to hurt. I just feel like people take your reaction to gluten more seriously if you have Celiacs as appose to a Gluten Intolerance.

sa1937 Community Regular
sa1937
Posted

We don't really need the Dx, I just feel like she has it, we've had all the tests and I just need someone with MD after their name to look at all of the results and say "Yep, It's Celiac."

She is going to remain gluten free. Even at 9 she knows if she eats gluten it's going to hurt. I just feel like people take your reaction to gluten more seriously if you have Celiacs as appose to a Gluten Intolerance.

I think I'd just tell people she has celiac, which according to the biopsy she does even though the doctor disagrees. Is anyone really going to ask for proof?

GottaSki Mentor
GottaSki
Posted

I agree - I'd feel comfortable saying she has Celiac Disease based on the results of the endo alone -- but she also had antibodies and improved on gluten-free diet.

If it becomes an issue in the future you could take her current results to another doctor to acquire a diagnosis. My adult daughter was diagnosed by symptom improvement from diet only after I was diagnosed -- you have far better data for a diagnosis.

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 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...
    2. 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...
    3. 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...
    4. 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...
    5. Scott Adams
      - Scott Adams 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

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

      By trents · Posted

      Contact them.
×
×
  • 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.