Jump to content
  • 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

If Not Celiac Then What?


jenny-ann

Recommended Posts

jenny-ann Rookie

My sweet little girl always has diarrhea. Allergy tests negative. Celiac tests (DNA included) negative. I think our next step is to see a nutritionist with her food/poop journal. Can you suggest anything else I could be overlooking?

TIA,

Jenn


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



Celiac.com Sponsor (A8-M):



Pac Apprentice

What else did you check beside food alergies and celiac? Infection, parasites, other digestive problems? Did you check for allergies in both IgE and IgG? Did the celiac test include anti-gliadin antibodies?

Was she treated with antibiotics? - Antibiotics can eliminate some strains of gut bugs or trigger off problems with overgrowth of otherwise harmless gut bugs, which in turn can lead to food intolerances (not mediated by immune system, ie won't show on any test).

Did you try elimination diet? That's usually the next step when tests don't show anything.

Good luck.

jenny-ann Rookie

Pac,

We did a stool culture. I don't know the answer to the IgE/IgG allergy question. I will review the labs myself next time we see the doctor. She did have a course of antibiotics in December. It made her poop pure water. Blech! She has been on a couple of different probiotics since then. We have eliminated wheat. We are now eliminating milk. We've never had any preservatives/dyes/etc. to worry about.

Thanks for the input. If you have any more please let me know! Brainstorming from others is what I am here for...

macocha Contributor

fructose malabsorption? a lot of folks have different reactions (poop-wise).

it is diagnosed through a hydrogen breath test. when they did my daughters, they also found that she had an infection in her intestine, which I guess you can only find out about through that test too.

T.H. Community Regular

I'd second the fructose malabsorption as a possibility. We've been checking into that recently. Sue Sheperd in Australia is a good resource on the most recent information about that on the web right now (this condition is very new; the test for it has only existed for 2 years now! So many docs don't know a lot about it yet). There's also a gazillion different intolerances you could add to that.

I tested negative to a lot of allergens that we have since found out give me a terrible case of the runs. The food/poop journal you mentioned was the way we figured it out. Adding 'mood' to that journal can be helpful, too. Many parents I've talked to noticed their children responding to certain foods with mood problems a day or two after the food was eaten. That can be a sign of poor absorption of Tryptophan, which can be caused by gut issues, even when there isn't a case of the runs to cue us in that something is wrong.

Oh also...what type of allergy tests did they do, prick test or blood test? If they did prick tests, I would push for blood tests if you can't find an answer. I can't tell you how many people I know who had negative prick tests for foods, who had positive blood tests when they persuaded their doctors to do them - I'd be one of them. :-)

Hmmm, wracking my brain here! Ah, something else! I'm sure you've been carefully watching dairy and gluten - those are always the big two mentioned for intolerance, yeah? Corn might be another one to look at. We had to eliminate that for my son, and I was stunned how much it is in. Baking powder, powdered sugar, iodized salt - it all has corn contamination. Because this substance isn't one of the major allergens, the labeling laws on it aren't as stringent, so it can be hard to track down. But that also means it's easy to have that stuff every day and never even realize it.

Good luck, I hope you find the answer for your little one soon!

My sweet little girl always has diarrhea. Allergy tests negative. Celiac tests (DNA included) negative. I think our next step is to see a nutritionist with her food/poop journal. Can you suggest anything else I could be overlooking?

TIA,

Jenn

LJ-Mom Rookie

We're in the same boat. Just got back all the celiac and allergy test and they were negative. Still gluten free, as it seems to make my son a much more wonderful person.

Had one week of nice solid poops, now we're back to the same old.

There seems to be so much that it could be, but our doctor is very skeptical about taking things out of his diet. As long as he's healthy he thinks we should give it time. (though I'm still can't bear to give wheat, and don't think I'll add it back)

GFinDC Veteran

Pac,

We did a stool culture. I don't know the answer to the IgE/IgG allergy question. I will review the labs myself next time we see the doctor. She did have a course of antibiotics in December. It made her poop pure water. Blech! She has been on a couple of different probiotics since then. We have eliminated wheat. We are now eliminating milk. We've never had any preservatives/dyes/etc. to worry about.

Thanks for the input. If you have any more please let me know! Brainstorming from others is what I am here for...

Eliminating wheat is good, but if you suspect celiac or gluten intolerance you need to remove rye, barley and oats also. Soy is another bad one for food intolerances. If you google "top 8 allergen" you should find some lists of the common food allergens. Might be a good starting point for things to eliminate.


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



Celiac.com Sponsor (A8-M):



macocha Contributor

Jenny,

try this at home and see if you see any improvement. if there is a fructose issue and the child has a infection in his/her gut - it might not work...

but, get rid of apples, pears, grapes, etc in her daily diet. stick with berry fruits or bananas as the glucose content is higher than the fructose content.

avoid spaghetti sauce and anything with tomatos. fructose is higher.

do not drink any juice but white grape juice (I know - a pain), but you could use the crystal light powder (not the pre-mixed liquid though as that has HFCS in it)

the only yogurt I have found w/o fructose in it is tillamook. stay away from choc milk unless you buy darigold and it says no HFCS in it.

Pasta noodles are a great source of 100% glucose, so use that with a bit of butter and cheese if you all have regular pasta.

do not use splenda or any other artificial sweetner. if you need sugar to sprinkle on berries or whatnot, you could use sucrose which is 50/50 fruc/gluc but dextrose is the best bet - it is 100% glucose.

label read even cookies and such - you do not want hfcs in there. most breads have it in them if you eat bread, but it isn't a significant amt. I found that country oven brand does not hfcs and she can have that.

you can pm me if you need any other info or email me. I don't mind answering. daughter was diagnosed with this and I had to learn a whole bunch. it took 2 years of pain and misery to get to this point.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,917
    • Most Online (within 30 mins)
      7,748

    tiffanygosci
    Newest Member
    tiffanygosci
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • tiffanygosci
      Hi! I had my first episode of AFib last May when I was 30 (I have had some heart stuff my whole life but nothing this extreme). I was not diagnosed with celiac until the beginning of this month in October of 2025. I was in the early stages of celiac, so I'm not sure if they were related (maybe!) All of my heart tests came back normal except for my electrolytes (potassium and magnesium) that were low when the AFib occurred. I also became pregnant with our third and last baby a couple weeks after I came back from that hospital stay. I had no heart complications after that whole thing. And I still haven't over a year later. It was definitely scary and I hope it doesn't happen again. I drink an electrolyte drink mix about every day, and I'm sure being on a gluten-free diet will help my body even more! I will pray for you in this. Taking care of our bodies is so challenging but Jesus is with us every step of the way. He cares and He sees you!
    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.