• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Long Time Celiac; Symptoms Resurfacing
0

13 posts in this topic

My 15 year old daughter was diagnosed via biopsy w/ Celiac when she was 9. She has been perfectly compliant with the diet because for the first time in her life she was physically thriving. I am confident, 100%, no shadow of a doubt that she continues to be compliant with the diet. She only has accidental glutenings maybe 1-3 times per year. We keep a gluten free house. She is an extremely sensitive Celiac (intolerant to Oats and everything).

 

SHORT VERSION:

Every time she eats, she feels glutening symptoms about 20 minutes later and always has very loose stools when she goes to the bathroom. A visit to her GI revealed low on vitamin D and B12 and possible signs of active Celiac in an endoscopy. Another visit to an allergist revealed no actual add'l food allergies. GI doc seems "stumped" and had no add'l suggestions.

 

LONGER VERSION:

 

That said...

 

...About 5 months ago, her Celiac symptoms began resurfacing with no obvious signs of glutening. Her acne flared up (ok, maybe normal for a teen, but otherwise had great skin), diarrhea and loose stools came back, started losing weight because everything she ate would make her feel crummy.

 

We did a loose food elimination diet and removed meat and dairy and made an appointment with her GI. He scheduled the full range of blood tests and another endoscopy to check things out. The blood tests showed deficiency in B12 and D vitamins and the endoscopy showed mild signs of Celiac (meaning gluten exposure). I may have been able to explain the gluten exposure because we *thought* she had been glutened some time in early September (this was early October when we saw the GI), but now it is February and I am completely sure she has had zero gluten exposure since then.

 

The doctor gave us no real course of action other than to see an allergist about additional food allergies. We did, and she came up negative. Nada. Zilch.

 

The problems persisted and we did a more thorough elimination diet. Keeping meat and dairy removed, she also noticed symptoms were worse after potatoes (but no other nightshades), corn (sorta, she says), peas, some nuts (peanut butter bad, almonds good).... But we have never reached a point where she feels "right" again.

 

I have made an appointment with a new family doctor (we needed a new doc and she hasn't had a well check in some time) and am hoping for kind of an overhaul/holistic approach, but hoping someone here may have had similar experiences.

 

I hate to worry about refractory celiac :wacko: or IBD/Crohns :huh: , but egaads. The poor girl just can't catch a break.


Thanks in advance for letting me vent and for any insight.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:

Just because she showed no allergies doesn't mean she doesn't have additional intolerances. From what I have read, soy can cause the same damage to villi as gluten and I believe dairy is the other one mentioned. (I have been trying to find out if corn does the same thing but can't find any info.)

 

You have eliminated gluten and dairy - how about soy?

0

Share this post


Link to post
Share on other sites

Oh yeah, the other thing I would check into is non-food items like her make-up and shampoo. Companies change their formulas all the time depending on the price of ingredients. It could be something as simple as a new ingredient in her favorite lipstick. Or maybe she is dating now that she is 15 and her boyfriend is kissing her after eating gluten?

0

Share this post


Link to post
Share on other sites

Just because she showed no allergies doesn't mean she doesn't have additional intolerances. From what I have read, soy can cause the same damage to villi as gluten and I believe dairy is the other one mentioned. (I have been trying to find out if corn does the same thing but can't find any info.)

 

You have eliminated gluten and dairy - how about soy?

Yes. I forgot to mention elimination of soy, too. So, to sum up for those keeping score at home, we have eliminated:

  • Meat
  • Dairy
  • Soy
  • Potato
  • Corn
  • Peas
  • Peanuts
  • Eggs (she will have occasional egg whites)

 

She seldom eats any nuts, other than an occasional pistacchio or almond.

 

I get that other food intolerances could be present, which is why I was so cool with trying an elimination diet. But I would view it as highly unsuccessful because her symptoms are not improving and her quality of life is low. We were very thorough and had her really just down to rice and broccoli and black beans and started reintroducing foods one at a time over a period of about 8-10 weeks.

 

She has been off of all of the above-mentioned foods since 1/1/13.

0

Share this post


Link to post
Share on other sites

Oh yeah, the other thing I would check into is non-food items like her make-up and shampoo. Companies change their formulas all the time depending on the price of ingredients. It could be something as simple as a new ingredient in her favorite lipstick. Or maybe she is dating now that she is 15 and her boyfriend is kissing her after eating gluten?

That's the first thing. And no kissing either. We even had the heart to heart about "are you *really* kissing someone" just to make sure she knew the severity.

0

Share this post


Link to post
Share on other sites
Ads by Google:


We really are true gluten vigilantes. She is really great about it, too. She just gets way too sick. Many nights of tears thinking she did something wrong...

0

Share this post


Link to post
Share on other sites

Eggs, too. We removed eggs, although she will have occasional egg whites. She says it doesn't make a difference. She's just not a fan of eggs. We started with the top 8 allergens and started working our way through all of the trouble categories.

0

Share this post


Link to post
Share on other sites

OK, I'm thinking. She has basically been sick since her last glutening? Maybe there was enough damage done then to, as my nutritionist put it, send her immune system into hyperdrive. I had had celiac for years, and when I first started gluten-free I felt great for a few weeks. Then some gluten-free cornbread sent me into a tailspin. After that it seemed like EVERYTHING made me sick. The nutritionist said I was reacting to the pesticide and chemical fertilizer residues on my food. She told me to go strictly organic for a while. It worked. Maybe worth a try?

0

Share this post


Link to post
Share on other sites

I vote for SIBO. Research is showing it's very common among celiacs, and has almost identical GI symptoms. I'm being treated for it as we speak.

0

Share this post


Link to post
Share on other sites

Here is a really good link I found about SIBO.

http://www.siboinfo.com/diet.html

 

We've had similar issues in our home and our son reacted after eating a raw corn cob the other day.  I'm wondering if it's because it wasn't organic because he doesn't react to corn.  He's stick thin and getting thinner, despite eating a lot of food.  His issues are grains.  I think he needs to cut them all to be well.

 

0

Share this post


Link to post
Share on other sites

There is another possibilility that I don't think anyone mentioned.  Some celiacs are sensitive to lower levels of gluten than others.  My son and I are sensitive to very low levels.  Some also increase in sensitivity as time goes on.  That happened to my son and I.  We are on a diet now of mainly home grown food.  I am not suggesting that you do that though.  What you can do is go to a diet of produce and unprocessed meats and see if symptoms clear up.  Then you can add foods one per week while keeping track of symptoms.  It can take about a week for symptoms to show up.  Then it is easier to find any other food intolerances or sources of trace gluten contamination.  I hope that you can get it figured out.

0

Share this post


Link to post
Share on other sites

My husband has a coworker whose brother has celiac- was diagnosed about a yer ago and felt great after starting the diet, but symptoms like you describe began creeping back- his GI diagnosed him with bacterial overgrowth. He is 110% after a few months of treatment.

Life changing for him.

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
      106,099
    • Total Posts
      928,912
  • Member Statistics

    • Total Members
      63,489
    • Most Online
      3,093

    Newest Member
    Reeda
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yes I made it  Welcome Lakme, you've found a great community and resource and I'm sure myself and Ennis won't be the only ones that recognise elements of our own experiences in your account.  In addition to the links Ennis sent you above and the stickied forum faq, I tried putting down some info that may be useful to people just realising they may have an issue with gluten, you can find it in this thread:    Reading your account you do tick a lot of the boxes and perhaps you have found the underlying cause. As that thread explains however, we can't diagnose you, if you want answers you'll need to be eating gluten in order for the tests to work. I know this is probably the last thing you want at the moment, but do read the thread and think about it. You're young and that diagnosis could prove useful for a number of reasons in the years ahead. The longer you leave it, the more of a challenge the gluten challenge may prove.  Out of interest how long since you started on the diet and have you noticed any change in symptoms? You may want to consider keeping a journal, it can be very difficult to track the neuro type symptoms in particular, a written account helps you do that and tracking progress can help with anxiety issues and depression too. I get these too. It's not formally diagnosed, like you I had a physical exam of the eye which failed to show anything, but I believe it to be optic neuritis. It's vastly improved since my diet change, as has an awful lot of other stuff.  So if you're celiac or non celiac gluten sensitive you will hopefully see similar improvements in the weeks, months and even years ahead.  I wish you the best of luck.  Matt
    • Lenbh- I was diagnosed last year and I have wondered that very question. Not too long ago (before kids) I traveled quite a bit. The idea of traveling now with celiac is a bit overwhelming.  I am pretty strict at home to avoid gluten and almost never eat in situations where CC is even possible- and as far as I can tell, I don't really get any symptoms of glutening.   I have definitely heard that it is easy to travel to Ireland with celiac. In fact, many restaurants have 2 menus - a regular and a coeliac. They often cook the food in a separate kitchen as well.  I can't wait to take my kids to Italy and am already thinking "how in the world will that ever work???" I have decided so far that I will do my best, not knowingly eat gluten, and try to buy food in stores or eat in "safe" restaurants -but understand that the more often I eat in restaurants, the more likely it is to be exposed to gluten. I guess it's just a risk I'm willing to take every once in a while so that I can explore the world with my kids.  And, yes, Gelato! At least twice a day while in Italy...:)
    • They do not work for prevention, they might help with getting over the gut pains. But will not stop the antibody reaction, or the damage. At $100+ a bottle your better off investing in Nima or EZ gluten strips and testing foods.   Other thoughts for quick alternatives. They sell microwave cookers out of plastic and silicon for eggs, bacon, etc. Might be worth getting and doing dishes that way. Steam bags and fresh veggies also to avoid pans and pots that could have issues. I been looking at MRE type stuff allergen friendly myself for trips and emergency's. Things get expensive at $6-7 a meal compared to bars or shakes.
    • I would not use these as prevention, but maybe they would help a post-glutening.  In my case, I travel with lactose tablets and digestive enzymes.    When glutened, I become lactose intolerant again.    Would hate to miss out on some gelato.  Do not forget any meds you normally take too.  
    • Thanks for the help! I didn't know Bacardi was gluten-free; that's a great option. 
  • Upcoming Events