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

Mild atrophy mucosa???


musicalmummy

Recommended Posts

musicalmummy Apprentice

My 15 year old daughters gastroscopy was done today due to having a positive with her blood test for coeliacs. The said what he saw didn’t look too bad for what the naked eye could see. The report he gave us for the gastroscopy states oesophagis normal, stomach normal, and mildly atrophic mucosa was found in the duodenal bulb. 
Will get the biopsy results next week so 🤞🏻 it’s also all normal.

Im beside myself waiting because of it’s not coeliac then they need to do further investigation as to why her bloods were positive.


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Welcome to the forum, @musicalmummy!

Gastroscopy and biopsy is the "Gold Standard" of diagnosis.  

"...mildly atrophic mucosa was found in the duodenal bulb..." may well be Celiac Disease. 

The duodenal bulb is often the area where damage is found.  That's where your doctor can see changes with the naked eye.  Much of the damage in early Celiac Disease is microscopic.  

Not diagnostic.  Not a doctor.  But typical of Celiac.

Some doctors will diagnose Celiac if blood tests are high enough.

Remember Celiac Disease is genetic.  Other family members need to be tested even if they don't have gastrointestinal symptoms.

Keep us posted on the results!

trents Grand Master
(edited)
1 hour ago, musicalmummy said:

" . . .mildly atrophic mucosa was found in the duodenal bulb . . . "

Im beside myself waiting because of it’s not coeliac then they need to do further investigation as to why her bloods were positive.

 

Atrophy of the duodenal bulb mucosa, especially if it is visible to the naked eye, points to celiac disease.

I guess I'm having a hard time understanding why you hope the biopsy results come back normal. If there is damage to the villi in the small bowel then that would confirm celiac disease and you would have your answer as to what is causing your daughter's health issues. If it comes back negative, you will be in limbo, with two factors indicating having celiac disease and one not.

Edited by trents
musicalmummy Apprentice
1 hour ago, knitty kitty said:

Welcome to the forum, @musicalmummy!

Gastroscopy and biopsy is the "Gold Standard" of diagnosis.  

"...mildly atrophic mucosa was found in the duodenal bulb..." may well be Celiac Disease. 

The duodenal bulb is often the area where damage is found.  That's where your doctor can see changes with the naked eye.  Much of the damage in early Celiac Disease is microscopic.  

Not diagnostic.  Not a doctor.  But typical of Celiac.

Some doctors will diagnose Celiac if blood tests are high enough.

Remember Celiac Disease is genetic.  Other family members need to be tested even if they don't have gastrointestinal symptoms.

Keep us posted on the results!

Thanks. It’s only been recent that she was sick, since she’d had covid actually about 4 months ago. 
I have had the blood test just after we got her blood results and mine are negative which surprised me as I can’t eat much without feeling gassy and my iron is so low I’m classed anaemic. Once we get biopsy results I’ll check the rest of the family 

52 minutes ago, trents said:

 

Atrophy of the duodenal bulb mucosa, especially if it is visible to the naked eye, points to celiac disease.

I guess I'm having a hard time understanding why you hope the biopsy results come back normal. If there is damage to the villi in the small bowel then that would confirm celiac disease and you would have your answer as to what is causing your daughter's health issues. If it comes back negative, you will be in limbo, with two factors indicating having celiac disease and one not.

Yes I did rethink about this and would prefer the answer we are testing for rather than having to investigate other reasons her bloods were like this 

knitty kitty Grand Master
(edited)

@musicalmummy,

You said "I can’t eat much without feeling gassy".  That's  symptomatic of Celiac and you've adjusted your diet not to include "much" already.  

Your body won't make antibodies to gluten if you are not eating gluten.  The blood tests for Celiac measure these antibodies.  Not consuming enough gluten will skew the test to a false negative.

If you were not eating at least two slices of wheat bread (or equivalent) in the two months prior to your antibody tests, you might have a false negative. 

Anemia can affect antibody production and result in a false negative.   So can diabetes.  Anemia impacts production of red blood cells and white blood cells such as the antibody producing cells.  

You might want get genetic testing to see if you carry any of the most common Celiac genes.    

 

Edited by knitty kitty
musicalmummy Apprentice
2 minutes ago, knitty kitty said:

@musicalmummy,

If you were not eating at least two slices of wheat bread (or equivalent) in the two months prior to your antibody tests, you might have a false negative.   

Your body won't make antibodies to gluten if you are not eating gluten.  The blood tests for Celiac measure these antibodies.  Not consuming enough gluten will skew the test to a false negative.

Anemia can affect antibody production and result in a false negative.   So can diabetes.  Anemia impacts production of red blood cells and white blood cells like antibody producing cells.  

You might want get genetic testing to see if you carry any of the most common Celiac genes.  

 

Yep was eating all gluten so maybe I’m just intolerant. 
I’ll see how her results go and then go further 🙂

musicalmummy Apprentice

The gastrologist rang and has put my daughter on an emergency wait list to discuss her results 


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

@musicalmummy

We're praying for you all.

trents Grand Master
(edited)
6 hours ago, musicalmummy said:

The gastrologist rang and has put my daughter on an emergency wait list to discuss her results 

An emergency wait list? That sounds like a contradiction in terms. What kind of symptoms is your daughter having? Is she quite ill?

Edited by trents
musicalmummy Apprentice
On 10/22/2022 at 12:47 AM, trents said:

An emergency wait list? That sounds like a contradiction in terms. What kind of symptoms is your daughter having? Is she quite ill?

I meant emergency cancellation. 
She feels ill and nauseous after eating

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    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

    • SamAlvi
      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
      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
      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
      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?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.