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

Quick Question


mmcc54

Recommended Posts

mmcc54 Contributor

so a quick history...my one year old was failure to thrive her pedi sent her for a blood panel which was positive...only TTG IgG was positive at 16 (anything over 9 pos) she had a neg biopsy, when I asked the GI why her blood work would be pos and that neg he said well her blood was only slightly pos but to go gluten free for 3 months and come back for a follow up?!?

Sooo she was doing great for about 2 weeks even gained a pound!!! This past Saturday we took her to the ER she had awful watery/bloddy looking BMs (it tested neg for blood though) they said it was most likely something she ate that had gluten in it...turns out they were right..grand parents gave her French fries at a restaurant..those French fries were fried with chicken fingers= cross contamination...her Pedi is convinced she has celiacs...but her GI doesn't think so. During this little bit of time she was exposed to gluten she lost 5 ounces also...would you have such a severe reaction to gluten if it wasn't celiacs??


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



Celiac.com Sponsor (A8-M):



notme Experienced

if she had a positive blood test, (not to mention she seems to be thriving gluten free!!)  you're the mama, you see the results of her getting glutened.  you're her first defense and her last resort as a parent.  even her pedi thinks so.  he can do follow-up blood tests, etc, can't he?  i would either get a better GI or be done with testing her and call it celiac.  that is my opinion from one mom to another :)

 

honestly, i think these doctors would rather keep people guessing so they can make the $$$$$$$$$$$   :(:( :(  and that is just sad...

tarnalberry Community Regular

What does the GI think it is?  She doesn't have gluten, she's great.  She does, and she's sick.  uh.... DUH!

tommysmommy Newbie

So think of it this way...when your little one was eating gluten - her body was creating powerful antibodies to fight the gluten (something her body saw as a foreign invader), the gluten was causing damage but the gluten was held somewhat in check by the antibodies. Eliminate gluten and her body quickly starts to reverse damage & stops building antibodies to fight it. Reintroduce gluten (cross contaminated fries) and bam - antibodies aren't there to fight the invader and it makes her sicker than she was before. She'll rebound faster, but got to keep that gluten away - her little body knows its a toxin & doesnt have the means to fight it anymore. It's the same with adults fyi.

mommy2krj Explorer

Hugs mama! We are in the same boat....positive tTG test but negative biopsies....though there was scalloping in the intestines that the GI doc saw. We are to be on a strict gluten-free diet for the next 3.5 months and then a check up too. So far my son's reactions aren't as severe as some I have read about, so I am thankful, but also a little fearful of what the future holds as far as that goes.

nvsmom Community Regular

...would you have such a severe reaction to gluten if it wasn't celiacs??

 

That sounds like a gluten sensitivity reaction to me.  Many celiacs have symptoms that severe, and many don't. Symptoms are very individual which is part of the reason it is tough to figure this disease out. When I get glutened, I tend to gain weight, get migraines, become more tired, get stomach aches and bloating, lose hair, and develop arthralgias in my joints.

 

Non-celiac gluten sensitivity (NCGS) can also cause the same symptoms and really negatively impact a person's quality of life.... but your daughter had a positive DGP (which is only positive when her body is working to damage her intestinal villi) so she has celiac disease rather than NCGS.

 

You might want to try avoiding eating out with her. It is really easy to get glutened in a restaurant. It is a hassle to pack food where ever you go, but it will probably be safer for her.

 

I hope she is back to feeling better (on the gluten-free diet) soon.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748

    Eric bell
    Newest Member
    Eric bell
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...