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

gluten-free Diet Isn't Working Anymore
0

8 posts in this topic

After 7 years of diarrhea, my daughter was tested through blood work and biopsy for celiac. Both results were negative, but she went gluten-free anyway in Feb. 2010. She improved dramatically and felt she was gluten intolerance. She had been doing great, but diarrhea has returned, somewhat. Could she have become more sensitive? I saw her gastro MD and told her she was doing well on gluten-free a few months ago. MD said great, but a lot of people who go gluten-free have symptoms disappear for 6 mons and then the diarrhea etc. comes back. She didn't know why. Has anyone else experienced this? Should she be tested for other food allergies or intolerances? This is frustrating. What will there be left for her to eat? Just don't want her to give up gluten-free in case gluten could cause other health probs down the road, lupus, etc. Anyone else experience this?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Having additional intolerances or allergies show up later is very common. However, there may also be gluten sneaking in someplace unsuspecting, such as CC from foods produced on shared lines or in shared facilities, shampoo, cosmetics, or skin/hair care products. Foods prepared in pans which are also used to prepare gluten-containing foods may be a source too. A toaster used for wheat bread is not safe (and cannot be reliably cleaned), so if she wants to toast gluten-free bread, she needs a dedicated toaster. Wooden utensils and cutting boards are also a no-no.

If the problem is from an additional allergy or intolerance, you might start looking at the top allergens, which include wheat (obviously), dairy, soy, eggs, corn, tree nuts, peanuts, and shellfish.

Processed Foods are subject to occasional reformulation, so rechecking labels is a good idea if you haven't already done so. Some foods may be more prone to CC than they used to be.

Hope you get it figured out soon!

2

Share this post


Link to post
Share on other sites

Have there been any changes in her diet recently? Something as simple as switching brands of a favorite food or beverage?

Otherwise, sadly other intolerances can develop. I'm 8 months gluten-free and am having GI issues again (although thankfully not anywhere near as bad as those last few months pre-gluten-free). Now I'm trying to figure out if I'm still recovering from being badly glutened a few weeks ago or if I'm developing a secondary casein intolerance. Not fun. Really hoping it's the former.

0

Share this post


Link to post
Share on other sites

how old is your daughter??

im asking, because- as an adult- i've done a lot of dieting. and now, ive finally gathered enough info to know that some of the diet foods ive eaten cause bloating and "D". anything with Sorbitol, Malitol, Mannitol, etc... (even just chewing the gum!!)

also, SOMETIMES dairy gives me "D".

and if i've had too much tea or coffee.

too much Fructose can give me HORRIFIC bloating and pain- but usually doesnt give me "D"

and stay off the gluten- she felt great going gluten free- so i would stick with it

0

Share this post


Link to post
Share on other sites




I got more sensitive to cc as time went on. I eat a whole foods diet now. I hope that she improves.

0

Share this post


Link to post
Share on other sites

We've discovered, much to our suprize, that we've developed a number of food allergies. Alot of folks say testing wasn't helpful for them but it was for us. We didn't have good luck with the standard allergist but I found one who is informed about food allergies and routinely runs large food panels and believes in eliminating foods even if there is no anaphylaxis. We have been through a process of eliminating those foods that we tested pos. to and re-introduced them one by one to see how or if we reacted. It's been eye opening and very helpful. I've found that many of my reactions were GI in nature.

0

Share this post


Link to post
Share on other sites

Make sure she isn't getting glutened somewhere first. Did you switch soaps, shampoos, conditioners? All that stuff gets in your mouth in the shower and bath, gets on your hands and then you eat. Look for hidden sources. Is she sneaking foods behind your back?

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
      103,642
    • Total Posts
      918,440
  • Topics

  • Posts

    • The US Preventative Services Task Force needs our help - tell them why Celiac screening is important!
      I am so angry. I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives. This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms (http://www.reuters.com/article/us-health-celiac-screening-idUSKCN0XU2G6?utm_content=buffer3ed50&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer) First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few. Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”: asthma bladder infections dental problems dandruff high blood pressure headaches blurred vision leg cramps back pain pale skin brittle nails acne bad bread mood swings ADD Anxiety Depression a short temper night terrors panic attacks irrational anger sinus pressure Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test. This is why I always say – You cannot know that you do not have Celiac Disease until you get tested. “One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.” WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future. “Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.” I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms. This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence. “The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.” This brought me to the USPSTF website. In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response: False positive – there are rarely false positives Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test? Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work. “Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” “– I’m glad that you think my life is so terrible. “Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications” – I’m not going to risk getting cancer, are you??? The USPSTF is taking public responses to their draft, all of which must be submitted by May 30th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it. This could be the most important thing you do for Celiac Awareness Month. Read the draft and write to the USPSTF here. http://www.uspreventiveservicestaskforce.org/Page/Document/draft-recommendation-statement150/celiac-disease-screening
    • New to this--first gluttened exp. How to feel better?
      Just adding to what others have said.  It does take some time but it's likely you will start to feel better.  It took me about a year but now I feel great.  A good probiotic might help.  I use one from Synergy that my naturopathic doctor sells at her office.  I have gotten in the habit of emailing restaurants before I try them and have had very good luck.  One owner of a very popular restaurant in my area took the time to reply and said she had Celiac disease (she sent great detailed info about their food).  Many of the people responding will even tell you who to ask for when you come in.  Good luck and hoping you feel better soon.
    • How effective is HD skin biopsy after being gluten free for a year
      i am presuming that the boils were dx as acne inversa, which can have a relationship to celiac in some persons
    • Anxiously waiting
      Thanks heaps. I will def be going private if the wait is too long. I have done a little research but i thought a gluten intolerance and coeliac was the same lol. My iron levels are just below average apparently but she said not bad enough for me to be this tired.
    • Celiac.com: Traveling While Gluten-Free? What To Consider From Someone with Celiac Disease
      There are a few definite truths about living gluten-free: You miss bagels every day. Curious friends regularly badger you with questions like “is ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,738
    • Most Online
      1,763

    Newest Member
    Ladywolf
    Joined