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

Elementary Child With Celiac - Advice Needed

daenglish

Recommended Posts

daenglish Newbie
daenglish
Posted

We have an elementary child with celiac. Even though he has been on a gluten free diet for four years, he still does not seem to be improving in weight gain, size. His stools are still loose. He had an endoscopy 8 wks ago and his intestines were inflamed and bled wherever the doctor touched them. He went on steroids for 2 months and had another endoscopy but he has not improved. All his vilia (sp?) are flat. The doctor, a pediatric enterologist, is recommending immune suppression drugs. Does anyone have advice for us?

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Has anybody looked at a possible soy intolerance in addition to gluten intolerance? Soy can also cause blunted villi in susceptible people.

I think things like immunosuppresive drugs should be a last resort after testing for EVERYTHING else first.

Also, are you absolutely sure he is gluten free? He may be one of those hypersensitive people, who react to minuscule amounts of gluten. The Codus Alimentarius is a curse for people like that, as the so-called gluten free foods will stop them from recovering.

Before trying dangerous drugs, you may want to try a very basic diet of foods that are very easy on the stomach and bowels, and that don't contain anything known to cause allergies in lots of people.

Don't feed him anything raw for a while (that includes fruit.......I couldn't tolerate any raw food for about six months after going gluten free, I am okay with them now most of the time), well cooked everything is good. Start with some soft meat and vegetables. Rice may or may not be okay at this stage. Apple sauce is good, soup is good.

Also, for a bit stay away from any of the gluten-free replacement foods, they're hard to digest. Don't give him ANY dairy at all for at least six months.

I hope he will improve soon!

flagbabyds Collaborator
flagbabyds
Posted

First of all, welcome.

I do agree with the soy intolerance. I would also say just try plain meats, rice, corn, maybe veggies. Make sure that all his meds are gluten-free, and all shampoos, lotions, and anything coming in contact with him. Are there any ways of CC in your house, make sure he has his own counter, toaster, and other stuff. make sure there are no chances of cross contamination.

hope he feels better soon!

Guest nini
Guest nini
Posted

you've gotten some great advice so far, I would avoid immunosuppresive treatments unless as a last resort... go back to the basics, keep everything really really simple, he may have to avoid dairy for a while and corn can also be difficult to digest. Make sure he is 100% gluten free with no cross contamination. Keep a food journal and log any and all responses or lack of response to any and all foods he eats. Be careful of juices too, some juices have artificial flavorings that can be from a gluten source, make sure all his personal care products are gluten-free, chap stick, sunscreen, toothpaste, vitamins, lotion, shampoo... also look out for play dough and other art supplies. Play dough is a NO NO... yeah I know they don't eat it (for the most part) but kids don't realize when they touch something and then put their fingers on their face or in their mouth that this could be a problem. Stay away from processed foods for the time being and see if he may be having a hard time digesting processed foods. Good luck with it all.

My daughter is in kindergarten and I know how difficult it can be to get them to change their ways, but remember, you can find good fun food that he will eat and hopefully you will be able to get him better quickly.

Keep us posted please.

Guhlia Rising Star
Guhlia
Posted

Also, you'll want to be sure that the surface he's eating his lunch on is extra clean. We've found that just because you can't see gluten, doesn't mean it's not there. Maybe you could pack a sanitizing wipe in his lunch box so he could wipe the table off and his hands off before eating.

Good luck! I hope you get some answers soon!

daenglish Newbie
daenglish
Posted
  • Author
We have an elementary child with celiac. Even though he has been on a gluten free diet for four years, he still does not seem to be improving in weight gain, size. His stools are still loose. He had an endoscopy 8 wks ago and his intestines were inflamed and bled wherever the doctor touched them. He went on steroids for 2 months and had another endoscopy but he has not improved. All his vilia (sp?) are flat. The doctor, a pediatric enterologist, is recommending immune suppression drugs. Does anyone have advice for us?

Thank you all for sharing your insight. I know my son is very sensitive. He does play with play dough so it sounds like that should be eliminated. Also, we do not have a separate food counter for him. I caught some other ideas, too. What is Codus Alimentarius? I did eliminate dairy for awhile but did not try the soy. His worse time is during the night. He is up and down 3-5 times a night. If we do go to a very simple diet, how long should it take for his stools to become solid?

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. plumbago
      - plumbago replied to plumbago's topic in Related Issues & Disorders
      7

      Anyone else with very high HDL?

      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and specu...
    2. trents
      - trents replied to plumbago's topic in Related Issues & Disorders
      7

      Anyone else with very high HDL?

      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    3. knitty kitty
      - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      7

      Anyone else with very high HDL?

      Wow, @plumbago, Curiouser, and curioser... Have you been fasting? Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract I must say it, try taking some Thiamine. Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or...
    4. trents
      - trents replied to Tyoung's topic in Related Issues & Disorders
      1

      Celiac Disease and Mild Chronic Gastritis

      Welcome to the forum, @Tyoung! I would assume for the time being that the mild gastritis and the celiac disease are connected and that once you get a good handle on gluten free eating and experience significant healing in the lining of your duodenum, you will also see improvement in the gastritis as well. Gastritis is more often than not an accompanying...
    5. Tyoung
      - Tyoung posted a topic in Related Issues & Disorders
      1

      Celiac Disease and Mild Chronic Gastritis

      Hello! I was recently diagnosed with celiacs and mild chronic gastritis was noted on my EGD as well. My GI did not even bring up the gastritis and when I asked she brushed it off. I really want to heal my gut completely not just from celiacs but also the gastritis. Did anyone else have this at diagnosis? Were you able to treat it? Was it associated with celiacs...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,908
    • Most Online (within 30 mins)
      7,748
    Rhan
    Newest Member
    Rhan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Anyone else with very high HDL?

      By plumbago · Posted

      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Anyone else with very high HDL?

      By trents · Posted

      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    • knitty kitty
      Anyone else with very high HDL?

      By knitty kitty · Posted

      Wow, @plumbago, Curiouser, and curioser... Have you been fasting?  Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract   I must say it, try taking some Thiamine.  Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or not. https://pmc.ncbi.nlm.nih.gov/articles/PMC3921172/#:~:text=Serum thiamine and its derivatives,supplementation (p %3D 0.009).
    • trents
      Celiac Disease and Mild Chronic Gastritis

      By trents · Posted

      Welcome to the forum, @Tyoung! I would assume for the time being that the mild gastritis and the celiac disease are connected and that once you get a good handle on gluten free eating and experience significant healing in the lining of your duodenum, you will also see improvement in the gastritis as well. Gastritis is more often than not an accompanying finding that is commented on in the post scope/biopsy notes when people are positive for celiac disease. 
    • Tyoung
      Celiac Disease and Mild Chronic Gastritis

      By Tyoung · Posted

      Hello! I was recently diagnosed with celiacs and mild chronic gastritis was noted on my EGD as well. My GI did not even bring up the gastritis and when I asked she brushed it off. I really want to heal my gut completely not just from celiacs but also the gastritis. Did anyone else have this at diagnosis? Were you able to treat it? Was it associated with celiacs or something entirely different? Thank you!!
×
×
  • Create New...