Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Now What?
0

12 posts in this topic

:(

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

Maybe your daughter wasn't 100% gluten free.

0

Share this post


Link to post
Share on other sites
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}>

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,644
    • Total Posts
      921,583
  • Topics

  • Posts

    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
    • Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight. One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all. These weird symptoms started about two years ago, becoming worse in say, the last 9mnths. Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive. My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?" Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac. Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep. Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies, "It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together." I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease. He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious'). Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon." I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,651
    • Most Online
      3,093

    Newest Member
    Kricket73
    Joined