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Now What?

Lanai

By Lanai
in Coping with Celiac Disease

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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!

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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

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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.

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