Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,272
    • Most Online (within 30 mins)
      7,748
    arya
    Newest Member
    arya
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • xxnonamexx
      What would a diagnosis tell me?

      By xxnonamexx · Posted

      Thanks so the blood test will tell if I need to take endoscopy to check damage done? The villi grows back over time. I am on elimination diet and don't feel like eating gluten for 6 weeks to take the blood test since I have vacations planned with my family and would love to feel good for the summer then after I will go for it. Eating 10g of gluten for 6 weeks I know I will have the running to bathroom moments again and cant probably deal with it easier during that time frame. I didn't realize cross contamination and have been really watching. Since I wnet for physical my blood was fine as far as vitamins etc. So I think I don't have malabsorption of nutrients vitamins.  I have been taking a protein shake from Revive for years to increase protein, fiber vitamins nutrient intake so I feel that has been helping. Thanks for the insight. Do you feel different when taking gluten-free cross contaminated? I have read about some items claim gluten free but may bother you when out at restaurants especially so I am trying to see if I encounter a cross contamination or a gluten product that said gluten-free. Thanks
    • xxnonamexx
      Elimination diet think I may be Gluten tolerant next steps to get tested? Questions

      By xxnonamexx · Posted

      Thanks I figured that much as a dietician won't be of much help. Since summer is coming and in 6-8 weeks I will be on vacation with my family I think I will maintain my gluten free diet and not get tested yet as it appears eliminating glute is helping me and for a test to say your right isn't going to hep me much. Does eating gluten vs. cross contamination do you feel any different? Reason I ask is to see if I ate something cross contaminated or that had gluten. I have been using FODMAP to track everything I eat which is an excellent app tracks your feeling, bowel movements etc. I remember I could go out and eat french toast without any issues then somedays eat regular oatmeal and maybe right after go to the bathroom or 2hrs later need to go. Since elimination gluten from oatmeal much better. however in 3 weeks that I eliminated gluten I had 2 instances of diarrhea and unsure if contributed to increase in fiber intake. I am also lactose but have eliminated dairy for yeas as well.
    • Jane07
      any advice would be helpful

      By Jane07 · Posted

      im do have low zinc and iron i know. thanks for the feedback. maybe i should be off dairy i feel i need dairy for calcium  im also a vegetarian. 
    • knitty kitty
      any advice would be helpful

      By knitty kitty · Posted

      @Jane07, welcome to the forum! Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients is common in Celiac Disease.  Supplementing with vitamins and minerals that are commonly low in the newly diagnosed can help immensely with recovery.   Vitamin D is frequently low.  Vitamin D helps regulate the immune system and calm it down.  The eight essential B vitamins help repair and maintain our body's health.  Magnesium, calcium, zinc and other minerals are necessary, too.  Vitamin C helps, as well.  Benfotiamine, A form of Thiamine, has been shown to promote intestinal healing. Are you still consuming dairy?  Eliminating dairy may bring some improvements.  Have you tried the low histamine Autoimmune Protocol diet?  Developed by a Celiac, Dr. Sarah Ballantyne, the AIP diet can improve symptoms while healing.  
    • knitty kitty
      What would a diagnosis tell me?

      By knitty kitty · Posted

      Welcome to the forum! A blood test for Celiac looks for the amount of antibodies your body is producing in response to gluten.  An endoscopy looks at the damage done by the antibodies attacking the villi lining the intestines.   When you have a cold or infection, antibodies are made that attack the foreign invader.  In Celiac Disease, our immune system recognizes gluten as a foreign invader and launches antibodies against it.  However, the gluten particles resembles the same structural components in our body cells.  As a result, the anti gluten antibodies attack our own cells, causing damage like flattening villi in the intestines and also potentially attacking vital organs like the thyroid, the pancreas, the brain, and the heart.   Gluten itself does not stay in the body for years.  The anti gluten antibodies stay in the body for years.  Our bodies remember gluten and continue making antibodies against gluten which continue to damage our bodies for years.  Eventually, if not triggered by gluten ingestion for two years or longer, our bodies may go into remission and stop producing the antibodies and thus end the inflammation and damage. You should be afraid.  You should be very afraid.  Consuming gluten accidentally or intentionally can start the while cycle over again from the beginning.  And getting to that state of remission again can take years.   A dietician or a nutritionist can advise you on how to start and sustain a gluten free diet while meeting your nutritional requirements.  We need essential vitamins and minerals to heal and maintain our health.  The gluten free diet can be lacking in essential nutrients unless we eat mindfully.  A nutritionist can teach us which foods will help us meet our nutritional requirements, and help us correct nutritional deficiencies with vitamin and mineral supplements.  
×
×
  • Create New...