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

What Do You All Thinnk?

Karwei5

Recommended Posts

Karwei5 Apprentice
Karwei5
Posted

My son(age 18 and has Down syndrome) has just had a biopsy to check for Celiac disease.

He went to the Gi Dr. because of abdominal pain ~throwing up every day for 3 weeks,~ grumbling in his abdomon and heartburn.(he has had the heartburn for at least 6 months)

He put him on Zelnorm(didn't seem to fix the problem) and scheduled a scope.(He also takes aciphex)

During the scope he found gastritis, moderate size hiatal hernia and "scalloping of the intestine(indicitive of celiac disease?)

Took biopsies of the intestine and stomach.

Previously in 2003 in a routine checkup had the tTg and the numbers were 153, had a biopsy that did not show celiac disease. The Dr. at that time said he absolutly didn't have celiac disease because it didn't show on the biopsy.

Did not suggest even after I asked that we do a gluten free diet and recheck the blood test. So we were dismissed from that gi dr and went back to his normal diet.

Is is usual to have gastritis with celiac disease or could a bacteria cause the gastritis and the scalloping?

What are your opinions?

Thanks,

Karol

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

Celiac.com Sponsor (A8-M):


Viola 1 Rookie
Viola 1
Posted
My son(age 18 and has Down syndrome) has just had a biopsy to check for Celiac disease.

He went to the Gi Dr. because of abdominal pain ~throwing up every day for 3 weeks,~ grumbling in his abdomon and heartburn.(he has had the heartburn for at least 6 months)

He put him on Zelnorm(didn't seem to fix the problem) and scheduled a scope.(He also takes aciphex)

During the scope he found gastritis, moderate size hiatal hernia and "scalloping of the intestine(indicitive of celiac disease?)

Took biopsies of the intestine and stomach.

Previously in 2003 in a routine checkup had the tTg and the numbers were 153, had a biopsy that did not show celiac disease. The Dr. at that time said he absolutly didn't have celiac disease because it didn't show on the biopsy.

Did not suggest even after I asked that we do a gluten free diet and recheck the blood test. So we were dismissed from that gi dr and went back to his normal diet.

Is is usual to have gastritis with celiac disease or could a bacteria cause the gastritis and the scalloping?

What are your opinions?

Thanks,

Karol

Wow, I would say the tTg indicated Celiac Disease and not enough biopsies were done to confirm it the first time. In other words, they missed it on the one biopsy. So now you are dealing with more complications. What a shame he's had to suffer so much longer when he could have been on a gluten free diet and start healing.

Let us know what the new biopsies show. But I think if he were my son I would get him on the diet and keep him there.

tarnalberry Community Regular
tarnalberry
Posted

I agree. It's time to try him on the diet, and see how he improves, particularly due to your new findings.

sonja69 Rookie
sonja69
Posted

hi!

I saw something about that down-syndrome and glutenintolerance/-sensitivity is related. I saw a TV program (in europe though) of a fosterfamily in the US which had around 13 children, and the majority of the kids had down syndrome and were glutenintolerant. I rememeber it well, since I was thinking about that gluten might cause my problems and I found it interesting and impressing that these people can cope with a) so many kids, B) some quite strong disabled (not only mentally) and c) have a special diet only for some kids, which means they were preparing different kind of meals every day. very difficult and I admired it!

maybe you can google a little and find something.

good luck, Sonja

Ursa Major Collaborator
Ursa Major
Posted

Karol, I definitely agree with the other posters that it is very likely that your son has celiac disease and needs to be on the gluten-free diet. The high tTg and all of his symptoms are evidence of that. Your first GI appears to have been incompetent when it comes to celiac disease (too many doctors are, but it is pretty pathetic how many GI doctors of all people are so ignorant on celiac disease as well!).

Karwei5 Apprentice
Karwei5
Posted
  • Author

Thanks for your replies. I called the Dr. Thursday and Friday. They have not called back with the results. Waiting is so hard.

Karol mom to Billy

Karwei5 Apprentice
Karwei5
Posted
  • Author

The Dr. Called Billy does have Celiac Disease.

I have an appt. tomorrow with my family Dr. for my Daughter. I will ask him my questions then.

TheGi Dr. said to call and make an appt. if we have any questions for him.

Also suggested the rest of the family get tested.

Karol mom to Billy

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Karol, I am glad you finally have an answer to Billy's problems. It's just a shame that he hasn't been on the diet all these years due to doctor's ignorance.

nikki-uk Enthusiast
nikki-uk
Posted
My son(age 18 and has Down syndrome) has just had a biopsy to check for Celiac disease.

He went to the Gi Dr. because of abdominal pain ~throwing up every day for 3 weeks,~ grumbling in his abdomon and heartburn.(he has had the heartburn for at least 6 months)

He put him on Zelnorm(didn't seem to fix the problem) and scheduled a scope.(He also takes aciphex)

During the scope he found gastritis, moderate size hiatal hernia and "scalloping of the intestine(indicitive of celiac disease?)

Took biopsies of the intestine and stomach.

Previously in 2003 in a routine checkup had the tTg and the numbers were 153, had a biopsy that did not show celiac disease. The Dr. at that time said he absolutly didn't have celiac disease because it didn't show on the biopsy.

Did not suggest even after I asked that we do a gluten free diet and recheck the blood test. So we were dismissed from that gi dr and went back to his normal diet.

Is is usual to have gastritis with celiac disease or could a bacteria cause the gastritis and the scalloping?

What are your opinions?

Thanks,

Karol

Hi Karol,

My 14 yr old son has Downs Syndrome and celiac disease.

It was only after my husband got diagnosed with celiac disease 2 yrs that I tied in my son's symptoms - and then I realised that people with Downs are more prone to celiac disease (or any auto-immune disease)

I'm sorry you are having such a struggle getting your son a diagnosis :(

At the very least your doc should have offered to repeat the bloods.

My son's first set of bloods were negative - but repeat blood tests a year later were positive (and subsequent biopsies)

None of the docs seemed that concerned and I must admit I pushed for repeat bloods.

It sounds to me like your GI doc did not take enough biopsy samples in the first endoscopy -damaged parts could easily be missed...and with the numbers on your son's blood tests, coupled with the other findings from the biopsies I think it's a dead cert.

It may be for your son that the damage has only begun in the bowel and that's why it was missed.

I'm sure I read somewhere that Downs' people tend to have milder damage..I'll try and look it up and will post a link if I find anything.

EDIT : I've just read your son has a diagnosis of celiac disease now! :)

Good Luck and I hope Billy feels better soon!! :):)

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. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    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

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.