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

Please Read: Can Someone Help?


Mern27

Recommended Posts

Mern27 Newbie

I am new here and see that there is a lot of informative people on here so I'd like to ask some opinions on my 5 year old daughter's health. Since she was born, she was always very gassy and had very loose stools. When she was 3, she began to complain of tummy aches (pointing more towards the belly button area). When she was 4 we noticed blood in her stool so we took her in for allergy testing and it showed very significant milk allergy and mild egg allergy. That was about 8 months ago. We have taken her off all milk proteins and there is some improvement, but now she complains of tummy ache (higher up now) when she eats. Her stools now seem to be very pale...kind of grayish. Her skin is very pale, dark undereye circles and quite skinny. The doctor said she tested negative for wheat allergy in which he put in the same category as Celiac disease when he was talking. Is there another test that can be done besides just normal allergy bloodwork? Does this sound like possible Celiac? I feel like the doctor did not do the Celiac testing...isn't the wheat allergy test different?

I would appreciate any input!


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Hi Mern,

I'm sure others will pop in with more ideas, but I wanted to welcome you to the board.

Yes, wheat allergy testing is different than Celiac.

Request that your doctor run the full Celiac blood panel, or find a doctor that will.

The panel includes: (from Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of luck, and I hope you find answers for your daughter.

akflboyd Rookie

Does she eat a lot of soy products? I have had my daughter on the Gluten-free Casein-free diet but was giving her soy yogurt. She kept complaining about her stomach hurting too. She is no longer eating the soy yogurt and we have not had any problems.

You have come to the right place! I am new to all this too so I don't dare act like I know much. Everything I have learned has been from people on this website. I cannot tell you how supportive and helpful it has been for me. I think the parents know more here on the website than any doctor.

Good luck and I hope you find the information you are looking for!

Kathleen

Mern27 Newbie
Does she eat a lot of soy products? I have had my daughter on the Gluten-free Casein-free diet but was giving her soy yogurt. She kept complaining about her stomach hurting too. She is no longer eating the soy yogurt and we have not had any problems.

You have come to the right place! I am new to all this too so I don't dare act like I know much. Everything I have learned has been from people on this website. I cannot tell you how supportive and helpful it has been for me. I think the parents know more here on the website than any doctor.

Good luck and I hope you find the information you are looking for!

Kathleen

Thank you for your reply. The only soy I have her on is soy milk...ocassionaly soy ice cream (once a month maybe). She tested negative to soy reaction so I would think it must be something else. Did your daughter have teeth problems? My daughter has had probably about a dozen cavities and I take very good care of her teeth. I heard that this can be a sign of malapsorption? I'm sure the dentist must think I am an awful teeth brusher! She also has swollen abdomen alot.

Mary-Ellen

MammaW Newbie

Hi there, I am very new to all this too. We don't even have a diagnosis for my 1 year old, but I have learned SO much from everyone here on this board. I wish I could remember all the good postings I have read that sound similar to yours, but I guess I would just say keep reading and reading here on this board -especially the "parents with kids" section and you will soon have many suggestions. I personally am considering the enterolab testing that everyone has suggested, but I still haven't decided yet or I may just stay gluten-free for my little guy for now and see how it goes. It is a week today of gluten-free and we have it a little rough because of a known rice allergy. so many gluten-free foods are made with rice. but good luck and definitely keep reading on here. Everyone has been wonderful!

confusedks Enthusiast

I just wanted to say that even though she came back negative for a soy allergy, she may have a soy intolerance. The difference is an intolerance won't kill her. A soy allergy would give her symptoms like hives, weazing, etc. I have a soy intolerance but I also tested negative to the soy scratch test and blood. But it does give me terrible headaches AND stomach problems.

Kassandra

Darn210 Enthusiast

Hi Mern, Welcome to the board.

Typically, Celiac disease will be diagnosed through a GI doc, not an allergist. Celiac disease is NOT an allergy. I'm assuming you don't have a GI (yet ;) ) so it may be quicker if your pediatrician would be willing to write up the lab request for a Celiac panel (the list that Happygirl had in her post). You may also want to add the Celiac gene panel which will tell if she is genetically predisposed to it. You're daughter has racked up quite a few of the "typical" Celiac symptoms. Don't except "not allergic to wheat" as a definitive answer. I think you're on the right track doing some research here. Good Luck.


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

the bad teeth is so common for children with a gluten problem. If you are not wanting an official diagnosis, I would just go gluten free & dairy Free & no soy milk, some soy milk etc, is not gluten-free. no one really needs soy or dairy.

my 9 year old double DQ1 granddaughter has lost all the enamel on her teeth. Her little borther age 7 has had the cavity problems and has a couple of spacers... Dentists need to be aware that excess cavities and dental problems in children is almost always due to a gluten problem, well unless they are 5 & still nursing a bottle at night ;) these grandchildren are not gluten-free because it just ruins my sons life - his words not mine. I am a little more than upset to see their health going down the tube... The 9 year old was also battling pneumonia most of last year & used to have asthma type attacks & has numerous hives & itchy rashes

& yes, I love Enterolab.com for testing, especially for children. i do not believe in an endoscopy for a child & if you have read the posts about the dangers of anethesia for children which everyone in the medical field knows & also they can easily get a hole poked in their intestines or have bleeding problems... etc etc. and not counting the fact that everyone should stay as far away from a hospital as they can unless they absolutely have to be there because of all the super bugs that hang around hospitals, & the hospitals have spent years glossing over that fact...

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.