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

Now What?

Lanai

By Lanai
in Coping with Celiac Disease

Recommended Posts

Lanai Newbie
Lanai
Posted

:(

Well, my daughter who is 7. Has been gluten-free for a week maybe 2 now. We had taken her to the doctor because she always seemed dehydrated. He tested for food alergies ASAP, and we found the ANTI-GLUTEN monster brewing inside her. The doctor took her off all glutens, and we had to take her in once a week to have her weighed. It didn't work... I took her yesterday and she had lost a pound. He wants to go ahead with the biopsy. I am really nervous. Anyone care to shed some light on the procedure. It has not been scheduled as of yet, but we have a date to go in to schedule it. He also wants her back on the gluten, as not to affect to out come of the biopsy. Well, I am ready to hear it. Bring it on!

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

Celiac.com Sponsor (A8-M):


DylansMom Rookie
DylansMom
Posted

I am so sorry :( that you too are having to deal with this. My son, Dylan who is 4 has just been diagnosed with this and we saw a specialist Monday. He goes in for the biopsy this Friday and due to blood in his stool, we are having a colon oscopy as well. Our GI specialist said his is the worst case he has seen. Not something you really want to hear, but it is what it is. From what I have been told, the endoscopy will be easy, except the child will get a shot as the put them under, but after waking up, if no reaction to anesthesia, the child doesn't know what happened and may have a scratchy throat. That is all.

I know it is a scary time, but I for 1 and so thankful for these message boards and all the people who have been diagnosed so we can all be better educated about it and get the food industry to be forthcoming with ingredients and clearer labels.

Dylan has been gluten free now for about 5 days and what an improvement in his desended tummy as well as his energy and color. We have been blessed and have a knowledgeable GI specialist and I think that is the biggest key is to find one who really knows about Celiac and is familiar with it.

Jnkmnky Collaborator
Jnkmnky
Posted

Maybe your daughter wasn't 100% gluten free.

Lanai Newbie
Lanai
Posted
  • Author
I am so sorry  :( that you too are having to deal with this. My son, Dylan who is 4 has just been diagnosed with this and we saw a specialist Monday. He goes in for the biopsy this Friday and due to blood in his stool, we are having a colon oscopy as well. Our GI specialist said his is the worst case he has seen. Not something you really want to hear, but it is what it is. From what I have been told, the endoscopy will be easy, except the child will get a shot as the put them under, but after waking up, if no reaction to anesthesia, the child doesn't know what happened and may have a scratchy throat. That is all.

I know it is a scary time, but I for 1 and so thankful for these message boards and all the people who have been diagnosed so we can all be better educated about it and get the food industry to be forthcoming with ingredients and clearer labels.

Dylan has been gluten free now for about 5 days and what an improvement in his desended tummy as well as his energy and color. We have been blessed and have a knowledgeable GI specialist and I think that is the biggest key is to find one who really knows about Celiac and is familiar with it.

<{POST_SNAPBACK}>

Lanai Newbie
Lanai
Posted
  • Author
Maybe your daughter wasn't 100% gluten free.

<{POST_SNAPBACK}>

:( Oh she was 100% gluten free, cereals and pasta and bread I bought all the gluten free stuff. Thats why the doctor is so concered. She pretty much ate meat and veggies, all fresh and made at home. All her starches came from Trader Joes all gluten free!!! So I am really nervous why it did not work.

KaitiUSA Enthusiast
KaitiUSA
Posted

Don't expect improvement so soon. It takes time and varies from person to person. Took me 3 months to really see a difference in weight and how I felt and then 8 months to really get back to normal. Just make sure she is 100% gluten free. If she was diagnosed through blood tests I would not do the biopsy personally because a positive one can rule it in but a negative one can NOT rule it out. There could be sporadic damage that they missed or no damage yet if in beginning stages.

Make sure things like soaps, shampoos, lotions, and anything like that are gluten free because thats another way to get traces in your system.

It's not an overnight fix but she will get better.

lovegrov Collaborator
lovegrov
Posted

A week or two gluten-free is not nearly enough time to see significant improvement, even for a child. But the biopsy is probably a good idea. I've had two and they were a breeze.

richard

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

Celiac.com Sponsor (A8-M):


Tesoro Newbie
Tesoro
Posted

The first time i remember being in hospital I was 5 or 6, the biopsy was ok and the childrens ward was very friendly, I spent a lot of time watching cartoons! I do think my parents were more worried than I was. I remember at the time being fascinated by the mechanics of the biopsy, but I always was a curious child. It was great to be on the gluten challenge before the biopsy, eating the same things as everyone else, but very difficult to go back to being gluten free after the results.

i bet you're thinking about it more than your daughter is! :)

Jane x

hilaryw Newbie
hilaryw
Posted

Don't worry! The endoscopy/biopsy is fine! I was really worried too. Ask for vercet b/f they wheel them into ER. My daugther is very anxious, so they let me suit up and come in with her to OR until she was out from the gas. Of course then they had to "escort" me out, b/c I didn't want to leave.... The whole thing took 45 minutes. She was upset for about an hour, fine the next day.

My question is about lactose intolerance. Does going gluten-free make some people more distressed from dairy??? Our GI told us to use lactaid, it is helping, but why the sudden gas pains from dairy?

THX

pixiegirl Enthusiast
pixiegirl
Posted

I think it might be to your advantage to have the tests done. But I agree with everyone here, it takes a good long while for some people to feel better. When I first went gluten-free I did get improvment the first week but I wasn't "all better" just not feeling like I was run over by a truck.

However I was glutened on a trip to the Florida panhandle back in May and it took 2 months for me to feel normal again.

Lastly on one of the Celiac lists I'm on there was a link to an article about how gluten-free foods are not always totally gluten free, they tested some and many contained gluten so its my opinion that when one first goes gluten-free the best way to do it is without any processed foods at all (much more difficult with a child, I do understand that). Plain meats, chicken, fish, veggies, fruit, rice. I did that for the first 2 weeks and then slowly added things in so I could tell what worked for me and what didn't.

I also think a lot of us find that after having Celiac we are sensitive to other foods or additives. I can tolerate soy in some forms but not others (I've still not totally figured this out yet) and there is something in a brand of gluten-free rice chips I buy that gives me the runs every time (so obviously I avoid them, but they do say gluten-free right on the bag). As much as you'd like a quick answer sadly with this disease it usually takes a while to figure it all out.

I hope the tests give you a better answer, good luck!

Susan

Carriefaith Enthusiast
Carriefaith
Posted

1 or 2 weeks on the diet would most likely not be enough time to notice major improvements like weight gain. For me, it took about 6 months on the diet to notice major improvements, and then a little over 1 year to feel almot 100% better.

The biopsy should be fine as long as she is 100% sedated. I was partially sedated for mine (meaning I was fully aware of what was going on) and I would not recommend that for a child. Just request full sedation and she won't even know what happened.

jknnej Collaborator
jknnej
Posted

Don't worry too much about the biopsies. They are painless.

As for the lactose intolerance, a lot of people with celiac disease have IBS as well. My GI specialist told me that he's never seen a case of IBS without lactose intolerance.

I still eat dairy but I do get bad gas pains when I eat it.

Archived

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

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


  • Member Statistics

    • Total Members
      131,180
    • Most Online (within 30 mins)
      7,748
    Ruby B
    Newest Member
    Ruby B
    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

    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      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
      Blood results

      By trents · Posted

      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
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...