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

Could Use Some Advice..haven't Been On In A While

kimber

Recommended Posts

kimber Enthusiast
kimber
Posted

Hi everyone

I haven't posted on this board in some time, but come here often to read the posts, get recipes etc

My ds, zachary, will be 4 on Halloween, and was diagnosed with reflux 2 weeks after birth

At 6 mnth I switched from b/f to alimentum and it was a HUGE mistake...once we strarted solids things only got worse

Zach was dairy/soy free but out of desperation and after keeping a food journal, I decided to try him on a gluten-free diet and within a few days responded with less tantrums, more energy etc...I was thrilled

2 weeks later, I don't know what happened, but he completely went downhill

I then realized he might be reacting to corn and eliminated that as well....more problems until I read about fructose intolerance and tried him on an a everything free, low fructose diet

Zach has been to several allergists and has never tested + to anything...we have been to 7-8 GI's and he has had b/w for celiac's etc and all has been neg...GI's pretty much blew me off

Zach is small for his age, but thankfully he is gaining...he is roughly 31 pounds

For the past few days he is eating basic white rice products, chicken and some pears...I don't know what direction to turn?

If I try gluten, even oats...he reacts...dairy/soy...he reacts?

If he has banana...grapes...more reactions

Is anyone in the same boat?

Is it possible to have a gluten and fructose intolerance....

I am very anxious and stressed out that I have been trying to figure this out for almost 4 yrs

Any advice GREATLY appreciated!

Hope all is well with everyone else

Kim

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

Kim,

You may not like what I have to say, but here goes.....

There is a reason your son has so many intolerances. The best way to try and figure this out is through alternative testing.

From what I have learned heavy metals, parasites, pesticides, insecticides, fungal, mold or lyme may all contribute to intolerances. Something else is definately going on with him, not just celiac/gluten intolerance.

I don't know where you live but if you can find someone who practices ART/ASYRA that would be your best bet. I've just started with that for my daughter at this point. I live in Washington state so if you are in Western Washington I can give you the name of who I see.....just pm me.

Different foods have different compounds that make them what they are. He could be reacting to a common compound that's in alot of different foods......or more than one compound.

kimber Enthusiast
kimber
Posted
  • Author

Thanks so much...I am open to any suggestion

I live in Norther NJ

Good luck on your end, Kim

Kim,

You may not like what I have to say, but here goes.....

There is a reason your son has so many intolerances. The best way to try and figure this out is through alternative testing.

From what I have learned heavy metals, parasites, pesticides, insecticides, fungal, mold or lyme may all contribute to intolerances. Something else is definately going on with him, not just celiac/gluten intolerance.

I don't know where you live but if you can find someone who practices ART/ASYRA that would be your best bet. I've just started with that for my daughter at this point. I live in Washington state so if you are in Western Washington I can give you the name of who I see.....just pm me.

Different foods have different compounds that make them what they are. He could be reacting to a common compound that's in alot of different foods......or more than one compound.

EmmaQ Rookie
EmmaQ
Posted

Once the gut is irritated food intolerances increase - my thought.

My advice would be to look into The Carbohydrate Specific Diet.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,073
    • Most Online (within 30 mins)
      7,748
    David Croft
    Newest Member
    David Croft
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      @KRipple, thank you for the lab results from your husband's celiac disease blood antibody testing. The lab result you share would seem to be the tTG-IGA (Tissue Transglutaminase IGA) and the test result is in excess of 10x normal. This is significant as there is an increasing tendency for physicians to grant a celiac disease diagnosis on the basis of antibody testing alone when the scores on that particular test exceed 10x normal. This trend started in the UK during the COVID pandemic when there was tremendous pressure on the medical system over there and it has spread to the USA. The tTG-IGA is the centerpiece of celiac disease blood antibody testing. All this to say that some doctors would grant a celiac disease diagnosis on your husband's bloodwork alone and not feel a need to go forward with an endoscopy with biopsy. This is something you and your husband might wish to take up with his physicians. In view of his many health issues it might be wise to avoid any further damage to his small bowel lining by the continuing consumption of gluten and also to allow healing of such to progress. The lining of the small bowel is the place where essentially all of our nutrition is absorbed. This is why celiac disease when it is not addressed with a gluten free diet for many years typically results in additional health problems that are tied to nutritional deficiencies. The millions and millions of tiny finger-like projections that make up the nutrient absorbing surface of the small bowel lining are worn down by the constant inflammation from gluten consumption. In celiac disease, the immune system has been tricked into labeling gluten as an invader. As these finger-like projections are worn down, the efficiency of nutrient absorption becomes more and more compromised. We call this villous atrophy.   
    • KRipple
      Celiac or Addison's complications? Can someone share their experience?

      By KRipple · Posted

      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
    • Jmartes71
      Celiac pain relief

      By Jmartes71 · Posted

      Ginger is my best friend, it helps alot with tummy issues..
    • aattana
      Positive gliadin (deamidated) IgG, normal everything else?

      By aattana · Posted

      Hi Phosphone, did you ever figure out what elevated your DGP?  I am in the same boat. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Scott makes a good point about the prednisone. It has a general suppressing effect on the immune system. Don't misunderstand me. In view of your husband's several autoimmune afflictions, it would seem to be an appropriate medication therapy but it will likely invalidate endoscopy/biopsy test results for celiac disease.
×
×
  • Create New...