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

How Soon To Test


jadesmum

Recommended Posts

jadesmum Rookie

Hi

My daughter has celiac disease she was diagnosed one year ago (when she was 18 months) she was very ill and wasted away. Anyway her specialist told me not to feed my son gluten until he was 12 months old. So he turned one in November and has been on Gluten for 2.5 weeks. He hasn't had a solid poo since! All very runny and it is giving him nappy rash badly. His mood has changed too he is more clingy and grumpy.

I have called the specialist today and am waiting for him to get b ack to me (which may be sometime this week). But I just don't know what to do, he is so miserable (he is usually the most happy baby around), I don't know if its a coincidence and maybe its some other gastro thing I am not sure. He is also getting teeth which doesn't help either.

Anyway my question is how soon is too soon to test, I was thinking they had to be on gluten for about 3 months, but I seriously don't think I can wait that long. Should I just do gluten-free again, hmm I don't know, I hate seeing him so sad, it brings me back to those awful days with my daughter. My daughter had Gluten for one year before she was tested (it isn't in our family so we didn't have a clue) and she looked like a starved child with her belly sticking out, she was miserable all the time and clung onto my husband like there was no tomorrow. She pooed all day and vomited (which my son hasn't done yet) and by the time they did the biopsy at 18 months her villi was completely flat. She is fine now, but has accidentally had gluten once and her mood was terrible.

Anyway sorry for the rant, but I just don't know if I can go through all that again, I want a diagnosis now I will have to go gluten-free again, what do you think my chances are?

Belinda


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

You could get a genetic test to see if he carries the gene. Just because he carries the gene does not mean he has celiac disease, but with the gene test and the dietary response you could justify keeping him gluten free with no more testing ... if you really want to know for sure, he needs to eat lots of it for three or four months.

FeedIndy Contributor

My doctor said 6-8 weeks. DD doesn't have an "official" diagnosis because her blood test was negative and we opted to do a gluten free trial instead of the biopsy. Her doc wants us to do a gluten challenge when she is 4 so she doesn't have to stay gluten free at school if it turns out to be unnecessary. I was told she would have to eat gluten regularly for 6-8 weeks, though she gets sick for 2 days if she finds a crumb on the floor so I don't see her lasting a week.

Ursa Major Collaborator

FeedIndy, your doctor is sadly misinformed. Six to eight weeks is not enough for valid testing and would likely result in a false negative. Six months to a year on gluten is usually required. I see absolutely no need for your daughter to go through having her villi destroyed and getting awfully ill (with possible permanent damage) just for an 'official' diagnosis. You know that gluten makes her sick, shouldn't that be enough evidence?

Belinda, I agree with Carla. Why not get the genetic test done? You really don't want your son to have his villi destroyed and be as sick as your daughter was. If he was my child, I'd put him right back on the gluten-free diet, and if his diarrhea, rash and crankiness go away, you really would have your answer.

FeedIndy Contributor
FeedIndy, your doctor is sadly misinformed.

He is learning right along with us. I'm just glad he was informed enough to make the celiac connection. She didn't have many symptoms at first, but he was right on top of her growth downturn. It's probably a moot point in our case anyway as I know she'll be violently ill by the end of the first week.

Ursa Major Collaborator

I am glad you're aren't seriously considering putting your daughter through torture like that. And I guess your doctor and my doctor are both learning. Which is good, at least they aren't arrogant on top of their ignorance, like some doctors.

And yes, he is ahead of a lot of doctors, by having considered celiac disease at all.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748

    wmkoehler
    Newest Member
    wmkoehler
    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

    • 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.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...