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

Ab Still Destended After 8 Months Gluten Free


janelyb

Recommended Posts

janelyb Enthusiast

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??????


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



Celiac.com Sponsor (A8-M):



ShayBraMom Apprentice

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??????

janelyb Enthusiast

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)

CarlaB Enthusiast

Bacterial dysbiosis?

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

bluejeangirl Contributor
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

shan Contributor

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?

janelyb Enthusiast
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????


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



Celiac.com Sponsor (A8-M):



janelyb Enthusiast
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?

janelyb Enthusiast
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.

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

Sorry, i speak english not american :D yess, i meant gas poor kid ;)

CarlaB Enthusiast
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).

janelyb Enthusiast
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 ?

CarlaB Enthusiast
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. :)

Brady's Mom Newbie

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

sjust Apprentice

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

hayley3 Contributor

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.

janelyb Enthusiast
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.

  • 3 months later...
Nancym Enthusiast
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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,466
    • Most Online (within 30 mins)
      7,748

    Kitten42
    Newest Member
    Kitten42
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Thanks for sharing this info! Frustrating to see companies who haven't used wheat as an ingredient start to do so! https://blistex.com/product/five-star-lip-protection/
    • Emily P.
      As of July 2025, Blistex is no longer gluten free for their five star protection lip balm The last ingredient is WHEAT! From Blistex' website, ingredient list for 5 Star Protection;: "Inactive Ingredients: bis-diglyceryl polyacyladipate-2, bis-stearyl dimethicone, butyloctyl salicylate, C12-15 alkyl benzoate, calendula officinalis extract, caprylic/capric triglyceride, carthamus tinctorius (safflower) seed oil, cetyl dimethicone, citric acid, euphorbia cerifera (candelilla) wax, flavor, microcrystalline wax, myristyl myristate, octyldodecanol, oryzanol, ozokerite, panthenol, phenoxyethanol, sorbic acid, stearyl behenate, sucralose, tetrahexyldecyl ascorbate, tocopheryl acetate, triticum vulgare (wheat) germ oil"
    • knitty kitty
      I followed the Autoimmune Protocol Diet to get my symptoms calmed down and my nutrients up.   I know what a struggle it is.  You're why I'm here. Smoothing out some rough parts of your journey makes my journey worthwhile. Here's the tests you can get for Celiac antibodies...  
    • knitty kitty
      @Ginger38, I'm with you!   I could not take Metformin.  I got so sick, constant diarrhea, abdominal cramps, extreme highs and lows, no energy, weight loss, muscle wasting.  Just horrible.   Metformin is known to block thiamine absorption.  Talk to your doctor about thiamine deficiency.  It's called Gastrointestinal Beriberi.  My doctor didn't recognize thiamine deficiency outside of alcoholism.  So I took over the counter Thiamine in the form Tetrahydrofurfuryl Disulfide and felt health improvement within an hour.  Magical!   I followed the Autoimmune Protocol diet to get my stomach calmed down and control my blood glucose levels without medication. Being diabetic, we lose more thiamine through our kidneys, and the Metformin on top of it and malabsorption from Celiac.  Talk to your doctor soon!
    • Jmartes71
      Thankyou I will be seeing my new primary this coming Monday and will ask.I did ask about some other blood test to look for that I saw on this website.I pushed the second ANA panel two months ago thinking it would show but found out it doesn't.I don't have lupus which seems what the ANA panel seems to only look for.I have come to the conclusion that doctors are like hair people meaning all hair places know how to cut hair and style but not all know how to grow hair.I was given tramadel for nearly 20 years to push through. I literally can't no more and stopped taking tramadel since I was swelling slowly in the belly.I will diffently show new primary this website and hopefully he will help.Its so hard because im falling apart with my eye, skin and read every label and stay away from what Im not supposed to.I had SIBO test done and it died on me and didn't complete all 8 breathes just the 5.I spoke to np and was finally validated by word of mouth.Cone to find out I have to repeat again.I went to a reputable hospital to be let down.I have to redo breath test but want to do at hospital instead of at home so no issues.Its not pleasant drinking that glucose stuff and not getting a direct answer. I live in Northern Cali.What recommended gi would know about celiac  disease, really know because I thought I found one but didn't. I don't want to digest any wheat, dairy, peanuts, rye, barely, eggs,garlic, walnuts because I get sick.When i showed the reputable hospital my past food allergies i was told that test is old.My thoughts were i was made in 1971 and its still avtive with diagestive issues. 
×
×
  • Create New...