Re: Gluten-free soy milk

[Guest guest]

Probably by now you've heard about celiac.com and delphiforums.com. Both are good sources of information in themselves and they will lead you to other links, books, organizations, etc..

Harper

In a message dated 11/12/2004 11:24:26 AM Pacific Standard Time, melbatavia@... writes:

Hi everyone! I'm a new member and a mother of a recently diagnosed 13-yr old daughter with short stature. Anyway, I'd love some input on your experience finding gluten-free soy milk and soy beverages. This may sound like an elementary question, but I just want to make sure I'm "doing it right."

Today, Meg is home because of an upset stomach, which of course means she might have accidently ingested some gluten OR she could just have a stomach ache. We are scheduled to see Dr. Snyder (Pediatric GI) at UCSF on November 24. Any advice for a 1st time visit? The original diagnosis came via blood test. She has not had an endoscopy. She's been gluten-free (to the best of our knowledge) since January.

Any and all advice would be gratefully appreciated. Be direct, I can take it.

Thanks all.

Batavia

Piedmont, CA

[Guest guest]

,

I have good luck with the Soy Silk brand of soymilk, but everyone is different. Hope Meg feels better soon. It is a little bit like walking around in a mine field---trying to stay away from gluten. it gets easier with time, thank goodness.

Jane Unlandmelbatavia@... wrote:

Hi everyone! I'm a new member and a mother of a recently diagnosed 13-yr old daughter with short stature. Anyway, I'd love some input on your experience finding gluten-free soy milk and soy beverages. This may sound like an elementary question, but I just want to make sure I'm "doing it right."

Today, Meg is home because of an upset stomach, which of course means she might have accidently ingested some gluten OR she could just have a stomach ache. We are scheduled to see Dr. Snyder (Pediatric GI) at UCSF on November 24. Any advice for a 1st time visit? The original diagnosis came via blood test. She has not had an endoscopy. She's been gluten-free (to the best of our knowledge) since January.

Any and all advice would be gratefully appreciated. Be direct, I can take it.

Thanks all.

Batavia

Piedmont, CA

[Guest guest]

We like Pacific Select Lowfat Soy milk.

When my family gets sick with what I think of as their "gluten-reaction" (irrational behavior, lowered immune function, tiredness, diarrhea, nausea) I first think of anything they might have had that is new to our diet. Second I think of anything they have eaten outside of the home. Most of the time I just have no clue, but occasionally I do find gluten in something I had overlooked. Also, you should realize she could have eaten something that had some spoilage (undercooked chicken, etc). It takes a while sometimes to recognize the effects of gluten verses other ailments, and the reaction can be different for different people.

Also be aware of other allergies she may have. Dairy, soy, and nuts are the top allergens. Many celiacs develop these allergies due to the permeability of their guts that allows for absorption of these foreign proteins into the blood and then the development of an immune response. Usually, however, these allergies are most prominent before diagnosis and will slowly fade as the gut heals and the immune response lessens.

As to the short stature, you should consider giving her supplements (if you aren't already doing so). I recommend liquid supplements as they are more easily absorbed by the gut. I started giving my 13-year-old son (on the celiac diet since he was 2) vitamins this year and he grew over 6 inches in the first 6 months of the year. Of course, that could have been the puberty growth spurt, but still I am convinced the vitamins helped. Supplementation with calcium would also be good for her bones (you can get that in liquid form). I use Liquid Health, MRM, and Emergen-C. This could be something to discuss with the doctor. Also, see Rholfs note about her experience after diagnosis in the newsletter I just posted. You may want to ask about a bone density test. I'm not sure if they do these for kids or not.

The other thing I would mention is to be careful if the doctor suggests a gluten challenge in order to do a biopsy (a biopsy after 11 months on the diet would be of little value, especially if it came out negative, as the damage to the gut is likely to be repaired). The reason to be careful is that research has shown that gluten challenge is associated with increased development of other autoimmune diseases, especially in children. It can also increase recovery time. Let me know if you want more info on this.

Good luck with your doctor visit and I hope Meg feels better soon.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: melbatavia@... [mailto:melbatavia@...]Sent: Friday, November 12, 2004 9:17 AM Subject: [ ] Gluten-free soy milk

Hi everyone! I'm a new member and a mother of a recently diagnosed 13-yr old daughter with short stature. Anyway, I'd love some input on your experience finding gluten-free soy milk and soy beverages. This may sound like an elementary question, but I just want to make sure I'm "doing it right."

Today, Meg is home because of an upset stomach, which of course means she might have accidently ingested some gluten OR she could just have a stomach ache. We are scheduled to see Dr. Snyder (Pediatric GI) at UCSF on November 24. Any advice for a 1st time visit? The original diagnosis came via blood test. She has not had an endoscopy. She's been gluten-free (to the best of our knowledge) since January.

Any and all advice would be gratefully appreciated. Be direct, I can take it.

Thanks all.

Batavia

Piedmont, CA

[Guest guest]

Thanks so much.

[Guest guest]

Thanks so much for the in-depth reply. I really appreciate the time.