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 With Pathology Reports?

millersinkenya

Recommended Posts

millersinkenya Rookie
millersinkenya
Posted

Hi! I am new here and I am just looking for some opinions. My son has had some major health issues for the last couple of years (he is now 3.5 years old). With out going into a lot of detail, I was wondering if anyone could look at his pathology reports from almost two years ago. We were told he did not have celiac but I am thinking that the GI doctor who told us that may be wrong. He is still having a lot of issues now and has started to get migraines for the last year. They have ruled anything out contributing to migraines and medicine is not working. He is having about 2 per week at this point. I read that celiac can contribute to migraines, so here I am! I asked the GI doctor to forward me his reports (his biopsies were read by two different pathologists) and I was shocked when on both of them, the path suggests celiac. I think he had blood work done but it was negative. He was 1y11m at the time of all of this. Does anyone know how to read pathology reports? I am including the final pages from both pathologists.

The kicker to all of this is that we live in Africa and there are no doctors here who know what celiac disease is to go and talk to about everything. I am starting him on a gluten-free diet now in hopes of helping, but I am just not really sure what the reports mean!

Open Original Shared Link

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


Twinklestars Contributor
Twinklestars
Posted

I am relatively new to all this, but the report clearly states there is some blunting of villi and also says his results are suggestive of celiac disease. I would think it would make sense given his age, that his villi are not going to be dramatically damaged at this stage. But the fact there is some damage there suggests a positive celiac diagnosis and he should most definitely be on a gluten free diet.

Please someone with more experience correct me if I'm wrong?

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the forum. His pathology reports are consistent with celiac disease. False negatives on both blood and biopsy are not uncommon but false positives are not. When the one or the other is positive a person does have celiac. All his first degree relatives, Mom, Dad and siblings should now also be screened even if they don't seem to have the same or any symptoms. You are in a good place to learn how to do the gluten free lifestyle so ask any questions you need to and read as much as you can here.

kareng Grand Master
kareng
Posted

Send a brief note like what you wrote above and the attachments. The email address is on the website:

Open Original Shared Link

Maybe hearing it from a doctor who knows about Celiac will help your doctors.

Roda Rising Star
Roda
Posted

I'm sorry that you have been going through a hard time with your little one. As Raven said his pathology reports are consistent with early changes associated with celiac. In the absence of other illness, then your doctor should have given the diagnosis of celiac and saved your poor child a few years of misery. You did the right thing by requesting his reoprts. Since you have had this happen I would, everytime he has any blood work or procedures, get written copies of everything. Now is as good a time as any to start him gluten free. All first degree relatives should be screened also ie, mom, dad, siblings.

millersinkenya Rookie
millersinkenya
Posted
  • Author

That is what I was thinking. The thing that kind of makes me a bit mad is the fact that this is from a year and a half ago. He may have only had minimal blunting then, but what damage have a done to him since then because of doctor error (if there is error)? I am just so frustrated about this. And, we have just moved to Africa for my husband's work- had we known this, we may not have moved because there are no doctors here at all that know what celiac is or how to deal with it clinically, along with the other associated issues with celiac.

Any other opinions? Thank you so much for your input, this forum has been a great resource for me from here!

millersinkenya Rookie
millersinkenya
Posted
  • Author

Thank you so much, everyone. I was afraid that this what you guys would say as well. I am just so completely unsure of why the ball got dropped by the doctors. I will send an email to the UofC address to see what they can say. I just don't know what to do from here as far as health care is concerned. We can do a gluten free diet, but here the labels are not very accurate on foods, etc., and it is just going to be hard (and very expensive). I called the hospitals here and no one could connect me with a doctor. Wish I could have a doctor trained here on celiac!

Thanks again :)

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you so much, everyone. I was afraid that this what you guys would say as well. I am just so completely unsure of why the ball got dropped by the doctors. I will send an email to the UofC address to see what they can say. I just don't know what to do from here as far as health care is concerned. We can do a gluten free diet, but here the labels are not very accurate on foods, etc., and it is just going to be hard (and very expensive). I called the hospitals here and no one could connect me with a doctor. Wish I could have a doctor trained here on celiac!

Thanks again :)

Go with as much whole unprocessed food as you can. That is cheaper and safer than looking for gluten free specialty foods. Meats, chicken, veggies, fruits, beans, rice etc are all gluten free in their natural form. Since the gluten free diet is the only treatment for celiac at least you didn't discover he needed something that required meds that you might not be able to access.

JoshB Apprentice
JoshB
Posted

That's certainly suggestive of celiac disease. Unfortunately with only level 1 marsh changes it's not even close to diagnostic, and I think your location may raise the likely-hood of other the other potential problems. At the age of one I don't think that a blood test would be likely to be effective; his immune system wouldn't have developed to the point where he would start showing normal signs. However, at the age of four it's much more likely that he would test normally.

In light of that I would suggest:

#1 -- Redo the blood test, before starting a gluten free diet. If at all possible make sure they use "deamidated gliadin peptide", which is supposedly more effective with young children.

#2 -- If the test is positive, be glad you know what it is and start the gluten free diet.

#3 -- If the test is negative, start gluten free anyway -- he may still be too young for the blood test. Now you'll have to evaluate effectiveness for yourself.

millersinkenya Rookie
millersinkenya
Posted
  • Author

That's certainly suggestive of celiac disease. Unfortunately with only level 1 marsh changes it's not even close to diagnostic, and I think your location may raise the likely-hood of other the other potential problems. At the age of one I don't think that a blood test would be likely to be effective; his immune system wouldn't have developed to the point where he would start showing normal signs. However, at the age of four it's much more likely that he would test normally.

In light of that I would suggest:

#1 -- Redo the blood test, before starting a gluten free diet. If at all possible make sure they use "deamidated gliadin peptide", which is supposedly more effective with young children.

#2 -- If the test is positive, be glad you know what it is and start the gluten free diet.

#3 -- If the test is negative, start gluten free anyway -- he may still be too young for the blood test. Now you'll have to evaluate effectiveness for yourself.

Thanks! we just moved here 2 months ago, so being in Africa would have no effect on the past test results. We lived in Colorado at the time. What do you mean that it is not even close to diagnostic? I am new to this, so I do not know, but wouldn't any villi blunting be indicative of gluten issues? The main issue with being here is that the doctors do not know what it is or how to test for it. The only lab that knew what I was talking about said that they would have to see about the tests and would have to send them overseas. Not sure we can afford that right now! What would be considered diagnostic as far as the biposies are concerned? Can a path tell a difference between gluten sensitivity and celiac?

Roda Rising Star
Roda
Posted

I have to disagree with Josh B (sorry Josh, not picking on you at all). He is right in the fact that the blood work is more unreliable in children giving more false negatives. I'm not sure how much more suggestive your report needs to be except with total villi blunting. And I aggree with you if indeed it is celiac from 1.5 years ago, the damage may very well have progressed. If it was me I wouldn't hesitate to go gluten free based on the previous path report. He does raise a good point, if you can, get him bood tested again before he goes gluten free.

millersinkenya Rookie
millersinkenya
Posted
  • Author

Thanks all!

millersinkenya Rookie
millersinkenya
Posted
  • Author

UPDATE:

The GI doctor has written back to me and stated that it does show that he should be diagnosed with Celiac Disease. They are sending me information on Monday. I guess we are officially gluten-free around here.

Roda Rising Star
Roda
Posted

UPDATE:

The GI doctor has written back to me and stated that it does show that he should be diagnosed with Celiac Disease. They are sending me information on Monday. I guess we are officially gluten-free around here.

Glad you got such a quick response.

ravenwoodglass Mentor
ravenwoodglass
Posted

UPDATE:

The GI doctor has written back to me and stated that it does show that he should be diagnosed with Celiac Disease. They are sending me information on Monday. I guess we are officially gluten-free around here.

That's great news. Glad it got straighted out and hope things are going well soon.

Twinklestars Contributor
Twinklestars
Posted

That's great they got back to you so quickly! Welcome to the world of gluten free :)

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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748
    pilber309
    Newest Member
    pilber309
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.