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Toddler W Celiac gluten-free For 6 Months But Still With Diarrhea


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#1 So-so's mom

 
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Posted 18 June 2013 - 12:00 PM

My now 2 year old daughter was diagnosed with celiac disease six months ago, after having watery, foul-smelling diarrhea for three weeks.  After 3 weeks of being on a gluten-free diet, her stools became more like a more liquid version of chunky peanut butter.  She has occasionally had formed stools, but mostly they have remained like chunky PB.  How long will it take for her to have normal stools?  It's already been six months!  When I saw the gastro three months ago, he said to give it six months but I haven't seen improvement.  I don't think we are continuously contaminating her re: we have made our entire house gluten-free and she doesn't go to school (and we watch her like hawks when she is outside our home).  When she had a clear exposure three weeks ago, her stool was explosive and watery.  I'm just wondering if she's sensitive to something else, too?  I removed gluten-free oats from her diet about two months ago. Should I eliminate something else?  If so, what?  She still doesn't seem to have regained her appetite, although she is growing along her growth curve nicely.


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#2 shadowicewolf

 
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Posted 18 June 2013 - 12:57 PM

Have you tried removing diary?


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#3 Lisa

 
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Posted 18 June 2013 - 01:33 PM

Have you tried removing diary?

My suggestion as well.  Dairy can create some of the same symptoms as a gluten intolerance, and most often, it can be reintroduced once intestinal healing can take place.


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#4 greenbeanie

 
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Posted 18 June 2013 - 02:31 PM

If she takes fluoride pills, make sure you check them for gluten too. Long before my daughter was diagnosed with celiac, I noticed that she always had tantrums right after taking fluoride. I stopped giving it to her and told the dentist about the tantrums, and he looked at me like I was crazy. But whenever I re-tried the fluoride, she had another tantrum within 20 minutes. Now, two years later, this finally makes sense. The pharmacist checked and gluten wasn't obvious as one of the inactive ingredients, but he had no idea whether it was made at a shared facility, etc., and he didn't seem able to get that info. My daughter is quite sensitive (reacts to Rice Dream, foods made at shared facilities, and probably a lot of other things we haven't realized yet), so we're not risking the fluoride and are just hoping that better overall health will do more for her teeth than fluoride will.
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#5 Lisa

 
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Posted 18 June 2013 - 05:21 PM

If she takes fluoride pills, make sure you check them for gluten too. Long before my daughter was diagnosed with celiac, I noticed that she always had tantrums right after taking fluoride. I stopped giving it to her and told the dentist about the tantrums, and he looked at me like I was crazy. But whenever I re-tried the fluoride, she had another tantrum within 20 minutes. Now, two years later, this finally makes sense. The pharmacist checked and gluten wasn't obvious as one of the inactive ingredients, but he had no idea whether it was made at a shared facility, etc., and he didn't seem able to get that info. My daughter is quite sensitive (reacts to Rice Dream, foods made at shared facilities, and probably a lot of other things we haven't realized yet), so we're not risking the fluoride and are just hoping that better overall health will do more for her teeth than fluoride will.

With due respect greeneanie, your post is purely speculative and unsupported by documentation.  Although you suspect that this is the answer your daughter's issue (and it may be so :) ), most members would want more than an antidotal solution.

 

Perhaps that was an other component in that fluoride pill that made her have tantrums.  Have you pursued that avenue? :)

Edit:

Just a breeze through google, issues several warning for fluoride for children. None of which are gluten related.


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Lisa

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"Not all who wander are lost" - JRR Tolkien

#6 greenbeanie

 
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Posted 19 June 2013 - 01:39 AM

With due respect greeneanie, your post is purely speculative and unsupported by documentation.  Although you suspect that this is the answer your daughter's issue (and it may be so  :) ), most members would want more than an antidotal solution.

 

Perhaps that was an other component in that fluoride pill that made her have tantrums.  Have you pursued that avenue?  :)

Edit:

Just a breeze through google, issues several warning for fluoride for children. None of which are gluten related.

 

I fully realize that it's anecdotal - my point was just that fluoride might be a possible source of cc that could be easily overlooked. As with any other medication, it certainly seems worth a call to the pharmacist to check. 

 

According to our pharmacist, the only inactive ingredients in my daughter's fluoride are magnesium sterate, grape flavor, and lactose. He was not able to tell me what exactly is in the grape flavor. My daughter is totally fine with all of those ingredients in other sources (even lactose), and she's also fine when she swallows some fluoride-containing toothpaste (not good, I know - we're working on rinsing better!). The pharmacist said there are lots of medications that use gluten as a binder, and that he has no way of telling whether these pills were made on shared equipment. Anyhow, I certainly hope that fluoride pills aren't a problem for other children! But if someone seems to have ongoing cc issues with no clear origin, it might be worth looking into.


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#7 So-so's mom

 
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Posted 19 June 2013 - 02:11 AM

My suggestion as well.  Dairy can create some of the same symptoms as a gluten intolerance, and most often, it can be reintroduced once intestinal healing can take place.

Yes, I removed dairy two weeks after we stopped gluten, almost six months ago.  The child is eating a very limited diet re: she was raised lacto-ovo-pesca vegetarian, but has never eaten eggs or fish (has refused them in all forms); then I removed gluten and dairy (I tried to introduce chicken, pork and beef after she was diagnosed with celiac but she persistently refuses them.  Then I removed oats re I read that sometimes a protein in gluten-free oats, called oats avenin, can cause similar problems as gluten for those who are sensitive.  So basically, she's drinking soy milk and eating fruits, vegetables, Lundberg gluten-free rice, tofu, gluten-free chips and tofutti and some gluten-free cookies and pretzels.  Not an impressive diet.  I've read that some rice is contaminated with gluten even though it says gluten-free but that sounds a little crazy to me.  That said, I'm willing to sift through my rice and wash it 18 times before using if truly necessary.....


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#8 So-so's mom

 
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Posted 19 June 2013 - 02:13 AM

My now 2 year old daughter was diagnosed with celiac disease six months ago, after having watery, foul-smelling diarrhea for three weeks.  After 3 weeks of being on a gluten-free diet, her stools became more like a more liquid version of chunky peanut butter.  She has occasionally had formed stools, but mostly they have remained like chunky PB.  How long will it take for her to have normal stools?  It's already been six months!  When I saw the gastro three months ago, he said to give it six months but I haven't seen improvement.  I don't think we are continuously contaminating her re: we have made our entire house gluten-free and she doesn't go to school (and we watch her like hawks when she is outside our home).  When she had a clear exposure three weeks ago, her stool was explosive and watery.  I'm just wondering if she's sensitive to something else, too?  I removed gluten-free oats from her diet about two months ago. Should I eliminate something else?  If so, what?  She still doesn't seem to have regained her appetite, although she is growing along her growth curve nicely.

I think I was hoping some one would say it is normal for the gut to take this long to recuperate and that their child took just as long or longer to develop "normal" stools (I would even take "near normal" stools).....I guess not: I need to keep looking for another cause.....


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#9 So-so's mom

 
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Posted 19 June 2013 - 02:15 AM

If she takes fluoride pills, make sure you check them for gluten too. Long before my daughter was diagnosed with celiac, I noticed that she always had tantrums right after taking fluoride. I stopped giving it to her and told the dentist about the tantrums, and he looked at me like I was crazy. But whenever I re-tried the fluoride, she had another tantrum within 20 minutes. Now, two years later, this finally makes sense. The pharmacist checked and gluten wasn't obvious as one of the inactive ingredients, but he had no idea whether it was made at a shared facility, etc., and he didn't seem able to get that info. My daughter is quite sensitive (reacts to Rice Dream, foods made at shared facilities, and probably a lot of other things we haven't realized yet), so we're not risking the fluoride and are just hoping that better overall health will do more for her teeth than fluoride will.

No, she doesn't take flouride pills but thanks for the idea, greenbeanie. 


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#10 dilettantesteph

 
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Posted 19 June 2013 - 06:36 AM

Soy is one of the major allergens so it might be a good idea to try eliminating that next.  If eliminating the soy doesn't do the trick, you might want to try those processed grain containing cookies and pretzels next.  There is that Tricia Thompson study of gluten-free grains (and soy) sometimes being contaminated.  https://www.glutenfr...g/blog.php?id=6

There is also the gluten contamination elimination diet for those with ongoing symptoms: http://www.biomedcen...1471-230X/13/40

It consists of: "brown and white rice; all fresh (no frozen, canned or dried) fruits, vegetables and herbs; fresh meats, poultry, fish and other non-processed protein sources. Unflavored, unseasoned dairy products are introduced on week 4. Allowed condiments are oils, vinegar (excluding flavored and malt vinegars), honey and salt. Allowed beverages are 100% fruit/vegetable juices, Gatorade, milk, water, and gluten-free supplemental formulas such as Boost and Ensure. All cereal grains aside from rice are prohibited. Processed cheeses, lunch meats, ham, bacon or other such processed, self-basted or cured meat products are not allowed. Lastly, a gluten-free multivitamin/mineral daily supplement is recommended and prescription medication (verified as gluten-free) is continued."

 

I hope that things improve soon.


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#11 So-so's mom

 
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Posted 19 June 2013 - 04:50 PM

Soy is one of the major allergens so it might be a good idea to try eliminating that next.  If eliminating the soy doesn't do the trick, you might want to try those processed grain containing cookies and pretzels next.  There is that Tricia Thompson study of gluten-free grains (and soy) sometimes being contaminated.  https://www.glutenfr...g/blog.php?id=6

There is also the gluten contamination elimination diet for those with ongoing symptoms: http://www.biomedcen...1471-230X/13/40

It consists of: "brown and white rice; all fresh (no frozen, canned or dried) fruits, vegetables and herbs; fresh meats, poultry, fish and other non-processed protein sources. Unflavored, unseasoned dairy products are introduced on week 4. Allowed condiments are oils, vinegar (excluding flavored and malt vinegars), honey and salt. Allowed beverages are 100% fruit/vegetable juices, Gatorade, milk, water, and gluten-free supplemental formulas such as Boost and Ensure. All cereal grains aside from rice are prohibited. Processed cheeses, lunch meats, ham, bacon or other such processed, self-basted or cured meat products are not allowed. Lastly, a gluten-free multivitamin/mineral daily supplement is recommended and prescription medication (verified as gluten-free) is continued."

 

I hope that things improve soon.

Thank you: that elimination diet sounds like it might be very helpful.


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#12 dilettantesteph

 
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Posted 20 June 2013 - 06:39 AM

You are welcome.  I really hope that it works out.  I have a hard time watching my son be sick.  He got diagnosed at 10 and is now 16.  I can't imagine how hard that must be with a 2 year old.  I guess he was sick then too, but I didn't know it. 

 

We are both on a diet like the one in the study, and have additionally found it necessary to do challenge/elimination diets to fine tune things a bit more.  We keep track of what we eat and try to only add one new thing per week so that we can track sources of reactions.  It can take that long to notice a problem and if you have added a number of things it gets complicated.

 

You are a good parent to be working on this so hard.  Be happy that her growth is on track due to your efforts so far.


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#13 Gemini

 
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Posted 20 June 2013 - 09:09 AM

Yes, I removed dairy two weeks after we stopped gluten, almost six months ago.  The child is eating a very limited diet re: she was raised lacto-ovo-pesca vegetarian, but has never eaten eggs or fish (has refused them in all forms); then I removed gluten and dairy (I tried to introduce chicken, pork and beef after she was diagnosed with celiac but she persistently refuses them.  Then I removed oats re I read that sometimes a protein in gluten-free oats, called oats avenin, can cause similar problems as gluten for those who are sensitive.  So basically, she's drinking soy milk and eating fruits, vegetables, Lundberg gluten-free rice, tofu, gluten-free chips and tofutti and some gluten-free cookies and pretzels.  Not an impressive diet.  I've read that some rice is contaminated with gluten even though it says gluten-free but that sounds a little crazy to me.  That said, I'm willing to sift through my rice and wash it 18 times before using if truly necessary.....

Lundberg rice is safe.  I have read their manufacturing process and the chances of gluten contamination are next to zero....they only process rice.  But, yes, soy could be the problem. It is for many people.  I just wonder because your daughter is not getting enough protein in her diet.  Do you eat meat or fish yourself?  It might help if your daughter sees you eating them in a positive way because then she might be more willing to try them.  I know this is tough trying to get kids to eat food they need. 

 

If the cookies and pretzels come from dedicated facilities, then the notion that they are contaminated is probably not true.  I am very sensitive and can eat cookies and pretzels from dedicated facilities and so do many other sensitive Celiac's.  But if she is sensitive to soy, they may contain soy.  Many baked goods do.

 

I wish you luck as I know how tough this can be. With such a spartan diet, you should be able to figure this out soon enough.  Toddler diarrhea must be so difficult to deal with! 


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#14 mommida

 
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Posted 21 June 2013 - 08:41 AM

Double check the house and hygiene products.  2 is tough, because a 2 year old will eat dog food and such.

 

If the symptoms persist, go back to the doctor.  Was your child scoped for the diagnoses?  Unfortunately many gut issues present with the same symptoms and some of these issues tend to have a higher connection to Celiac.  i.e. H. Ployri. infection, Eosinophilic Disorders, and even down to stomach inflammation.

 

Like Gemini stated soy is on the top 8 allergen list.  (Always the easiest place to start with the usual suspects. Then try the higher reactive allergens that didn't make the list~ like peas.)

 

Was allergy testing even considered?  (Was not helpful at all for my daughter's situation diagnosed with Celiac and Eosinophilic Esophagitis.  We tried it for any information to eliminate the trigger allergens.)

 

Good Luck!  Many here have great information and experience to help along the way.  So ask any question you need.


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