Jump to content

  • 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
      131,545
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.