Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

This topic is now archived and is closed to further replies.

janelyb

Ab Still Destended After 8 Months Gluten Free

Recommended Posts

Ok my 4 yr old has tested inconclusive for celiac on the blood panel, he doesn't have the genes but does have double set of gluten sensitve gene.....He's been off gluten for 8 months, off casein for 6 months and off soy for 2 months. Eatting has improved, weight has improved, rash is gone but his constipation is still here (when he goes off his miralax meds) and his ab is still destended.

There is only a small minite chance there was cc, no gluten food in our home and all meals are allergen free

What else is going on, any ideas???

He had a rectal biopsy but we didn't get a good enough sample to give the lab. He goes on the 12/6 for an endoscopy & tissue biopsy, upper & lower GI workup/test,& another rectal biopsy.Dr thinks it is Hirsburgs but agrees to keep him on his current diet and she still says she isn't positive he isn't or is celiac.

Oh the constipation problem started 4 years ago when he was 6 months old!

But his ab is still extremely destended??????


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Oh, you mean Hirshsprung-desease, they tested my son for that too, they need a pretty good piece for that biopsie to test that! Well, is he getting regualr Milk, is hemaybe not doing too well with Milk or milkproducts? My dd reacts the same way to milk (mostly plain) like she does to Wheat, but in addition to that it makes her verry constipated, Dairy is notorious in causing constipation actually!

(PS: My son has had constipation since he was born, he's now almost 5-he's been on MiraLax since he was 2.5yrs. old, it's heaven sent)

Ok my 4 yr old has tested inconclusive for celiac on the blood panel, he doesn't have the genes but does have double set of gluten sensitve gene.....He's been off gluten for 8 months, off casein for 6 months and off soy for 2 months. Eatting has improved, weight has improved, rash is gone but his constipation is still here (when he goes off his miralax meds) and his ab is still destended.

There is only a small minite chance there was cc, no gluten food in our home and all meals are allergen free

What else is going on, any ideas???

He had a rectal biopsy but we didn't get a good enough sample to give the lab. He goes on the 12/6 for an endoscopy & tissue biopsy, upper & lower GI workup/test,& another rectal biopsy.Dr thinks it is Hirsburgs but agrees to keep him on his current diet and she still says she isn't positive he isn't or is celiac.

Oh the constipation problem started 4 years ago when he was 6 months old!

But his ab is still extremely destended??????


Susi with Shayden and Brandy

Shayden, pos. with DQ 2, pos. for Glutensensitivity with Tissuetransglutaminase Stool TgA 45 Units

Brandy, pos. with DQ2 + DQ8, DX Celiac Nov.07, gluten-free since Nov. 1st 07, Tissuetransglutaminase Stool TgA 63 Units

Me: Gastroscopy negative f. Celiac, IBS, Oesophagitis, Hiatus-Hernia

Share this post


Link to post
Share on other sites

Join eNewsletter

yeah that's what she's looking for too. He's been off all dairy since May and off soy as well.

Oh, you mean Hirshsprung-desease, they tested my son for that too, they need a pretty good piece for that biopsie to test that! Well, is he getting regualr Milk, is hemaybe not doing too well with Milk or milkproducts? My dd reacts the same way to milk (mostly plain) like she does to Wheat, but in addition to that it makes her verry constipated, Dairy is notorious in causing constipation actually!

(PS: My son has had constipation since he was born, he's now almost 5-he's been on MiraLax since he was 2.5yrs. old, it's heaven sent)


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

Share this post


Link to post
Share on other sites

Join eNewsletter

Ok my 4 yr old has tested inconclusive for celiac on the blood panel, he doesn't have the genes but does have double set of gluten sensitve gene.....He's been off gluten for 8 months, off casein for 6 months and off soy for 2 months. Eatting has improved, weight has improved, rash is gone but his constipation is still here (when he goes off his miralax meds) and his ab is still destended.

There is only a small minite chance there was cc, no gluten food in our home and all meals are allergen free

What else is going on, any ideas???

He had a rectal biopsy but we didn't get a good enough sample to give the lab. He goes on the 12/6 for an endoscopy & tissue biopsy, upper & lower GI workup/test,& another rectal biopsy.Dr thinks it is Hirsburgs but agrees to keep him on his current diet and she still says she isn't positive he isn't or is celiac.

Oh the constipation problem started 4 years ago when he was 6 months old!

But his ab is still extremely destended??????

Are you using bean type flours? Or even worse would be soy anything. Soy gives me major bloat. The other thing that comes to mind is peanuts, or peanutbutter. Its a legume and hard to digest for some. Its so hard to call because it might be an allergy to something and that can be anything. I've just given you foods that are hard to digest.

Gail


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

Share this post


Link to post
Share on other sites

Join eNewsletter

Are you using bean type flours? Or even worse would be soy anything. Soy gives me major bloat. The other thing that comes to mind is peanuts, or peanutbutter. Its a legume and hard to digest for some. Its so hard to call because it might be an allergy to something and that can be anything. I've just given you foods that are hard to digest.

Gail

nope no bean flours here....we do brown rice,tapioca mainly.

And we avoid soy.

He doesn't eat legumes and hasn't had p'nuts in quite some time.

He does he a good amount of corn products though????


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

Share this post


Link to post
Share on other sites

Join eNewsletter

My dd had to go to the emergency room for something and the dr said her stomach is really bloated let me have a feel. He said it is all air and there are things for it to take... Is that also your son?

Hummm, how does one get that much air in the tummy to cause bloating? You mean gas???? Like what did they suggest taking?


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

Share this post


Link to post
Share on other sites

Join eNewsletter

Bacterial dysbiosis?

Parasites? (I can recommend Humaworm for this .... worked wonders for me and comes in a kid's formula)

I will have to google that. The doctor did mention she thought it might be somthing that would require antibiotics but I don't like giving meds on a maybe answer so I told her she would have to prove to me there is an infection or parasite to give meds.


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

Share this post


Link to post
Share on other sites

Join eNewsletter

I will have to google that. The doctor did mention she thought it might be somthing that would require antibiotics but I don't like giving meds on a maybe answer so I told her she would have to prove to me there is an infection or parasite to give meds.

I had bacterial dysbiosis very badly. There are natural ways to heal it and I agree with you that abx aren't necessarily the best option when the bacteria balance is already off in the intestines.

Probiotics would be good and necessary to restore proper balance.

Also, check out www.humaworm.com. I just used the product and it worked miracles for me. I feel so much better. It's for bacteria, parasites, yeast, and even worms. It's gentle and herbal. There is a kid's version and every batch is handmade so if there are any ingredients that he can't have, they can be left out. (I have no affiliation with this company).


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Join eNewsletter

I had bacterial dysbiosis very badly. There are natural ways to heal it and I agree with you that abx aren't necessarily the best option when the bacteria balance is already off in the intestines.

Probiotics would be good and necessary to restore proper balance.

Also, check out www.humaworm.com. I just used the product and it worked miracles for me. I feel so much better. It's for bacteria, parasites, yeast, and even worms. It's gentle and herbal. There is a kid's version and every batch is handmade so if there are any ingredients that he can't have, they can be left out. (I have no affiliation with this company).

How do they test for bacterial dysbiosis ?


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

Share this post


Link to post
Share on other sites

Join eNewsletter

How do they test for bacterial dysbiosis ?

I was tested by Genova Diagnostics. It's stool test but is not widely accepted by GI docs .... it's considered somewhat alternative even though it tests for the specific bacteria and parasites.

I'd also check out the Humaworm website. :)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Join eNewsletter

Corn is a definite possibility. We didn't discover my 2 year old son's corn allergy until after he had been gluten, soy, casein and egg free for 7 months. Our allergist discovered it through a food patch test and confirmed it with a skin prick test last week. Now that he has been off corn for a month, his belly bloat has gotten considerably better, he has gained 3 pounds and 1-1/2 inches in height. I always thought it was the soy or the dairy. Be careful, though, corn is in EVERYTHING!! All the other restrictions were nothing compared to removing corn. I've got my son on a pretty much whole foods diet with some Enjoy Life products (he likes the very berry bars).

Good luck!

Lynn

Share this post


Link to post
Share on other sites

Join eNewsletter

I agree that it could be corn. My dd reacts strongly to corn. If you decide to go corn free let me know and I will give you some advice. Someone told me corn makes gluten look like childs play and I have to agree. Good luck

Sarah


Sarah 29 gluten-free for daughter since March 2007

Rebecca 12/21/06 apppears to be sensitive to all foods FFT

Robbie 1/12/07 cashew allergy, doing better off gluten

Share this post


Link to post
Share on other sites

Join eNewsletter

My daughter was constipated for a couple of years and we found out she had pinworms. You can only see them at night crawling around near the anus. Disgusting I know. If you don't know what you're looking for, you wouldn't recognize it as being a worm. Our pediatrician said that they are becoming more and more common because of daycare centers. You can buy the worm medicine at the drug store. My kid used to wake up around 11 pm some nights and say her butt hurt and I finally figured it out by getting a flashlight and looking down there.

Doesn't hurt to cover all your bases.


Osteoporosis, and sacroiliac arthritis diagnosed 32 yrs of age.  Chronic low wbc, Severe constipation, Migraines, severe GERD, multiple miscarriages, Sjrogen's disease, positive ANA, thyroid nodules (hyperthryoid), fatty liver disease with elevated enzymes, low vitamin D, low protein, IBS, SIBO, Discoid lupus, mulitple food allergies and massive hair loss.  I left my career because I was too sick to keep working, and it was devastating because I couldn't apply for disability without a diagnosis.  My daughter was a preemie and she has Central Auditory Processing Disorder (CAPD) and had a positive ANA and Rheumatoid Factor at 16 and now has been dx'd with Hashimoto's.

 

Allergic to:  corn, rice, beans, tomatoes, dairy.  Not diagnosed as celiac.

Share this post


Link to post
Share on other sites

Join eNewsletter

My daughter was constipated for a couple of years and we found out she had pinworms. You can only see them at night crawling around near the anus. Disgusting I know. If you don't know what you're looking for, you wouldn't recognize it as being a worm. Our pediatrician said that they are becoming more and more common because of daycare centers. You can buy the worm medicine at the drug store. My kid used to wake up around 11 pm some nights and say her butt hurt and I finally figured it out by getting a flashlight and looking down there.

Doesn't hurt to cover all your bases.

I can say the thought has crossed my mind. I will look it up online and consider it. I remember someone once told me to put a piece of tape in the diaper at night and the worms will get stuck to it. I might try that.


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

Share this post


Link to post
Share on other sites

Join eNewsletter

Bacterial dysbiosis?

Parasites? (I can recommend Humaworm for this .... worked wonders for me and comes in a kid's formula)

I was relapsing into terrible diarrhea again. For about 4-6 weeks, just horrible. I know it wasn't gluten. Anyway, I stumbled onto Humaworm mentioned somewhere and thought... ah heck, I know this isn't going to work but what the hell. Well, I've been on it about 2 weeks now and things are calming down. I don't know what was going on in my gut, I suspect bacterial overgrowth of the small bowel (SIBO) or maybe H. Pylori. But I never thought this crazy stuff would actually do anything.

Anyway, glad I tried it! I was about to go back to the doctor and was figuring it'd be just a huge dead-end.

The only problem I've had with it is that it gives me heart burn if I take it right before lying down. So I have to take it an hour or so before I go to bed at night.

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter