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

  • 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.

Extended Breastfeeding & Celiac Diagnosis
0

28 posts in this topic

Hi--I have posted before about my son (in 2010), and the issues seem to be coming up again.

Does anyone know whether extended breastfeeding (and I mean until age 5) can actually cause endoscopies and blood work to appear normal?

My son nursed until he was a bit over 5. He had dropped off his growth curve slowly but surely from age 2.5 on. He had blood work a few months before his birthday (low total IgA, but the rest were normal). His endoscopy was normal, despite the doctors at Children's making us think it was "very' likely he'd have celiac. Upon giving us the results, a different doctor said he "never" would have thought it was celiac. (Thanks--because we really wanted him put under "for no reason"!)

He maintained his low curve from age 5 to age 6--so, we became less concerned, and though he was short and just finding his curve--no problem. Then, from 6 to 7, he dropped again. He is the size of a 5yo. Everyone in his class is bigger (except for the one kid who has smaller parents, and is also younger than him). The kids at his day camp are all much bigger as well.

Let me be clear (since IRL I take heat for even broaching that there could be something wrong with his height!)--if he has genetic short stature, that's fine. However, dropping off the curve is not fine. I am about 5'5" (average weight). Husband is 5'7" (and very skinny). According to the charts, he and I are average, not "tiny"--therefore, our kids should be average as well (or, if shorter, not dropping further). Our other two kids are average, and have maintained similar growth (though the youngest is only 2, so hard to tell for sure).

My son has diarrhea (not watery, but undigested food) EVERY day, for the most part. To him, that is normal. Everything is "clean" coming out; he's definitely not constipated. His stool tests from 2010 showed carbohydrate malabsorption. He was a bit low on total IgG as well, but everything else was normal. His feet have not grown in over a year. He's about a size 10.5-11. His clothes are size 5-6. Kids are starting to comment here and there. ("Who's baby flip-flops are these? They must be the toddler's!" "He wears size 4???!!!!")

I am reluctant to take him off gluten and see. He's a fauxgetarian (chicken wings and turkey dogs somehow aren't meat? whatever!), and unless I could tell him that he needed to eat meat (even grass-fed meat!) for medical reasons, he would not. He is the kid who will eat brownies, etc. without asking. So, again, I wouldn't be able to control him at every moment unless I had his buy-in due to his health. At day camp, for instance, he eats bread and pasta for lunch every day. At home, he eats fruits and vegetables as well. Control will be easier during the school year. But, even then, I'd rather know for sure then not know.

The way we left it at his 7yo appointment was a weight and height check two months later. We're supposed to feed him more--he eats what he wants as he's always done--sometimes more, sometimes less. Luckily, he's always loved avocado. Even if he grows, though, he still won't have grown enough in that particular year (he'd have to grow a lot to make up for it). He looks good (i.e., healthy) so no one thinks that it's a endocrine problem. I suppose it could be a constitutional growth delay, but (and I could be wrong), I thought that meant he would have just dropped to a much lower curve than he used to be on? Not that he would keep dropping.

Thank you!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Has he been tested for fructose malabsorption and small intestine bacterial overgrowth by hydrogen breath test?

0

Share this post


Link to post
Share on other sites

No he wasn't tested. They made it sound like there was only a test for lactose intolerance. Would these other issues also contribute to delayed growth?

0

Share this post


Link to post
Share on other sites

ANY malaborsoption (I know I most likely totally fudged that spelling, sorry!) problem can cause growth delays.

There are SO many different GI tests that could be done to see if there is something else going on.

Have they done a bone growth x-ray yet?

0

Share this post


Link to post
Share on other sites

My dd didnt grow her kindergarten year. I noticed the curve was down. She went from 50% to 21%. They found she was hypothyroid. (celiac diagnosis was negative at that time but positive 4 years later). So I'd have the thyroid panel done.

0

Share this post


Link to post
Share on other sites




ANY malaborsoption (I know I most likely totally fudged that spelling, sorry!) problem can cause growth delays.

There are SO many different GI tests that could be done to see if there is something else going on.

Have they done a bone growth x-ray yet?

They didn't do a bone growth x-ray. The hope was that he found his curve last year. But, this year, it's been pretty apparent he's just not growing a lot. (I think he grew only two inches?) I read about that--that's one way to determine if might just be a late bloomer? There is some evidence of that in the family (my dad was 6'1", but was shorter than his 5'4" or so older sister when he was 13). Our concern again has been that he keeps dropping off his own curve. There was mention that we should see endocrinology if that continued to happen. (Our pediatricians do not suspect anything serious; one of them was certain there would be no celiac back in 2010, and the other one seems to think there will be no endocrine issue. I hope not!)

I didn't realize that a carb malabsorption could contribution to growth delays as well. They seemed to minimize it--even at Children's. They unenthusiastically offered us a day-long lactose intolerance test, and that is still a food he's never complained about after eating.

0

Share this post


Link to post
Share on other sites

My dd didnt grow her kindergarten year. I noticed the curve was down. She went from 50% to 21%. They found she was hypothyroid. (celiac diagnosis was negative at that time but positive 4 years later). So I'd have the thyroid panel done.

That's interesting! (I'm hypothyroid, but under treated, I gain weight--I didn't realize it was different in kids.) They tested for many things back then, and I'll have to check on thyroid. When we go back for the weight check next month, we will ask for a complete thyroid panel along with everything else. Thank you!

My son is probably around the 10th in weight and the 3rd in height (he was in the 5th last year). He was never very tall, but his infant/toddler height and weight were in the 50th and 90th (or something like that).

0

Share this post


Link to post
Share on other sites

2" of growth in a year is average. My son's bone growth x-ray was taken when he didn't grow *at all* in approx a 12 month time frame. He was found to have a 25 month bone growth delay but interestingly enough he had been fairly average in height until his GI system started to really show what it can not do. He is now 100% g-tube fed (his entire GI system is dysfunctional) and finally catching up to his peers. Still a tiny man but finally growing :D

The Pedi never thought anything of my son's growth OR GI issues but yeah, I just love the look on their face when they read the reports from the GI. We *adore* our GI and wouldn't know where we would be without him.

0

Share this post


Link to post
Share on other sites

2" of growth in a year is average. My son's bone growth x-ray was taken when he didn't grow *at all* in approx a 12 month time frame. He was found to have a 25 month bone growth delay but interestingly enough he had been fairly average in height until his GI system started to really show what it can not do. He is now 100% g-tube fed (his entire GI system is dysfunctional) and finally catching up to his peers. Still a tiny man but finally growing :D

The Pedi never thought anything of my son's growth OR GI issues but yeah, I just love the look on their face when they read the reports from the GI. We *adore* our GI and wouldn't know where we would be without him.

I'm glad you found your GI--he sounds wonderful! And it sounds like your son has improved a lot under his care, too! Sorry to hear that your pedi was so unhelpful.

I did read that 2 inches is normal, and appreciate that. (I guess the drop in both curves is the problem.)

0

Share this post


Link to post
Share on other sites

Sounds a lot like my oldest boy. He has never had any bloodwork(multiple times over the last 4 years) show positive and is NOT IgA deficient. He had a negative scope/biopsy as well.

He was normal weight and height when born. By the time he was 12 months old he had dropped considerably on his growth and weight gain. Suffered constipation since the day he was born. Was put on miralax at 2 years old after many doctor visits and barium enema x-ray later. He was always small but stayed consistent on "his" growth pattern so we didn't worry. I started to get really concerned when he was in 4th grade when I started noticing he had started to fall on his chart for two years. It was around when his younger brother was diagnosed with celiac that I started to get concerned. His brother was always small also and within 3-4 months he had a growth explosion.(he grew 4" + the first year after going gluten free) He didn't grow any his 4th grade year and was almost the smallest kid in the entire grade of 60 students. His symptoms at the end of that school year were constipation, abdominal pain/bloating, gas pains, nausea and occasional reflux. That summer I decided to consult with a GI to see about getting him scoped.

He went gluten free after his scope for a trial of three months. All his symptoms went away, his color was better and he gained 6# in 1.5 months. He has started to grow also and has gained a few inches, but he still grows slow but I think that is just him. He decided after trying gluten again gluten after the three months to stay gluten free because of all the benefits he saw and that he felt better too. If he gets glutened he gets terrible stomach pain/bloating.

The bone age x-ray and a thyroid panel are good suggestions. My oldest son has had his thyroid checked but not a bone age study yet. I want to see how much he has grown first since his last physical and go from there. He is 11.5 now and going into 6th grade. As far as clothing goes, on average he wears a 10 slim in pants and a 10-12 in shirt.

0

Share this post


Link to post
Share on other sites

Re: your initial question about extended BF - I have nothing scientific to give you, but I will say that I also extended BF my DS to age 5 (he is also 7 now). Although he clearly had food intolerance issues from very early on (about 3 weeks) and malabsorption also from infancy his scope in Jan of 2011 was considered normal. I would have thought that being symptomatic that long would surely mean a positive scope if celiac disease was actually the issue and so after the negative scope I spent a long time thinking it had to be something else. When I couldn't find any other explanation (and in his case we did have a positive tTG) I took him to a celiac clinic out of town and after they thoroughly reviewed his case they thought it was suspicious enough to eliminate gluten. And it now appears he is getting better. So it seems that most likely he does have celiac disease after all. In my mind I am convinced that the extended BF'ing probably did provide some protection against damage in his GI system and maybe was the reason his scope was negative all those years after he seems to have developed clear symptoms. Who knows. But I think it probably made harder to diagnose.

0

Share this post


Link to post
Share on other sites

Does anyone know whether extended breastfeeding (and I mean until age 5) can actually cause endoscopies and blood work to appear normal?

As to this question, I don't think anything can cause normal blood work except a lack of a problem. As for everything else, is your child following his curve? Cause that is more important than any chart. The growth charts they use are old, outdate and based on formula fed kids. Maybe get a hole of the WHO growth charts and see where your child falls on it?

0

Share this post


Link to post
Share on other sites

I would just like to add that I think the protective effects of breastmilk are probably capable of supressing some of the symptoms. My DS was virtually exclusively breastfed until his molars finally came in around 15 months, though he probably had wheat introduced close to 9 months in the form of a cracker or cheerio here or there. Gluten products in small amounts were some of the only foods I could get him to eat early on. Once his molars came in, he started eating a lot more food, and at the same time, I started producing a lot less milk as I had become pregnant, so he was eating a diet containing plenty of wheat foods and other food from 16-18 months. By 18 months, I had very little milk left and that is when his chronic diarrhea first appeared.

His sibling will be born in the next few weeks and as he has never weaned, we'll go back to tandem nursing. I'm hoping that we'll see a renewal in digestive benefits as he starts getting decent amounts of breastmilk, and that this will outweigh the secondary lactose intolerance that he's developed.

0

Share this post


Link to post
Share on other sites

As to this question, I don't think anything can cause normal blood work except a lack of a problem. As for everything else, is your child following his curve? Cause that is more important than any chart. The growth charts they use are old, outdate and based on formula fed kids. Maybe get a hole of the WHO growth charts and see where your child falls on it?

Oh, I'm concerned only with the curve. I know on normal charts he was considered obese as a one-year-old. On the breastfed chart, he was in average range (if at the upper end). Again, it's definitely all about the curve here--whichever one we use, he's dropped.

0

Share this post


Link to post
Share on other sites

Sounds a lot like my oldest boy. He has never had any bloodwork(multiple times over the last 4 years) show positive and is NOT IgA deficient. He had a negative scope/biopsy as well.

He was normal weight and height when born. By the time he was 12 months old he had dropped considerably on his growth and weight gain. Suffered constipation since the day he was born. Was put on miralax at 2 years old after many doctor visits and barium enema x-ray later. He was always small but stayed consistent on "his" growth pattern so we didn't worry. I started to get really concerned when he was in 4th grade when I started noticing he had started to fall on his chart for two years. It was around when his younger brother was diagnosed with celiac that I started to get concerned. His brother was always small also and within 3-4 months he had a growth explosion.(he grew 4" + the first year after going gluten free) He didn't grow any his 4th grade year and was almost the smallest kid in the entire grade of 60 students. His symptoms at the end of that school year were constipation, abdominal pain/bloating, gas pains, nausea and occasional reflux. That summer I decided to consult with a GI to see about getting him scoped.

He went gluten free after his scope for a trial of three months. All his symptoms went away, his color was better and he gained 6# in 1.5 months. He has started to grow also and has gained a few inches, but he still grows slow but I think that is just him. He decided after trying gluten again gluten after the three months to stay gluten free because of all the benefits he saw and that he felt better too. If he gets glutened he gets terrible stomach pain/bloating.

The bone age x-ray and a thyroid panel are good suggestions. My oldest son has had his thyroid checked but not a bone age study yet. I want to see how much he has grown first since his last physical and go from there. He is 11.5 now and going into 6th grade. As far as clothing goes, on average he wears a 10 slim in pants and a 10-12 in shirt.

Thanks for the story about your sons. I thought my son would be unwilling to be gluten-free, but he actually is willing. If blood work is again normal, we will try it. (My 10yo is constipated, too; we've avoided miralax, barely. All her tests were normal as well. It's good to be normal! But, we just don't know what causes the constipation. Our current thinking is soy intolerance since our youngest seems to have obvious issues with soy as well.) We will also do the bone age x-ray and thyroid panel as mentioned by pp above.

0

Share this post


Link to post
Share on other sites

Re: your initial question about extended BF - I have nothing scientific to give you, but I will say that I also extended BF my DS to age 5 (he is also 7 now). Although he clearly had food intolerance issues from very early on (about 3 weeks) and malabsorption also from infancy his scope in Jan of 2011 was considered normal. I would have thought that being symptomatic that long would surely mean a positive scope if celiac disease was actually the issue and so after the negative scope I spent a long time thinking it had to be something else. When I couldn't find any other explanation (and in his case we did have a positive tTG) I took him to a celiac clinic out of town and after they thoroughly reviewed his case they thought it was suspicious enough to eliminate gluten. And it now appears he is getting better. So it seems that most likely he does have celiac disease after all. In my mind I am convinced that the extended BF'ing probably did provide some protection against damage in his GI system and maybe was the reason his scope was negative all those years after he seems to have developed clear symptoms. Who knows. But I think it probably made harder to diagnose.

Thanks for responding--I don't know too many people who have kids with food issues who've breastfed that long. He spit up a lot (projectile vomiting), which could have been due to oversupply. He also had five loose bowel movements a day until at least 18 months (or longer), possibly.

My son's tests were normal, but I guess low IgA would affect the tTG IgA (but the endomysial was also normal). He didn't have the newest test--DGP?

We may try eliminating gluten and seeing what, if anything, that does for him if we once again have no reason for his slowed growth.

0

Share this post


Link to post
Share on other sites

I would just like to add that I think the protective effects of breastmilk are probably capable of supressing some of the symptoms. My DS was virtually exclusively breastfed until his molars finally came in around 15 months, though he probably had wheat introduced close to 9 months in the form of a cracker or cheerio here or there. Gluten products in small amounts were some of the only foods I could get him to eat early on. Once his molars came in, he started eating a lot more food, and at the same time, I started producing a lot less milk as I had become pregnant, so he was eating a diet containing plenty of wheat foods and other food from 16-18 months. By 18 months, I had very little milk left and that is when his chronic diarrhea first appeared.

His sibling will be born in the next few weeks and as he has never weaned, we'll go back to tandem nursing. I'm hoping that we'll see a renewal in digestive benefits as he starts getting decent amounts of breastmilk, and that this will outweigh the secondary lactose intolerance that he's developed.

Thank you, this is what I was thinking, too, about the protective effects of breastmilk. I've read the article that breastfeeding can delay the onset of celiac disease (or perhaps prevent it), but I wasn't sure if that was still the case after solid food introduction (though, I suppose even with a very young baby, there is still exposure via the milk). Also, I wasn't sure about whether the breastfeeding could affect the results of an endoscopy (by, perhaps, preventing actual damage from occurring).

Good luck with the rest of your pregnancy and tandem nursing!

0

Share this post


Link to post
Share on other sites

To answer about hypithyroid. It is different in kids. My pediatrician said that people bring in their overweight children all the time and demand their thyroid be tested. She said she knows if they have normal height then it probably isn't that. Growth is a big sign in kids.

0

Share this post


Link to post
Share on other sites

Thank you, this is what I was thinking, too, about the protective effects of breastmilk. I've read the article that breastfeeding can delay the onset of celiac disease (or perhaps prevent it), but I wasn't sure if that was still the case after solid food introduction (though, I suppose even with a very young baby, there is still exposure via the milk). Also, I wasn't sure about whether the breastfeeding could affect the results of an endoscopy (by, perhaps, preventing actual damage from occurring).

Good luck with the rest of your pregnancy and tandem nursing!

Thank you so much. I guess I should add that my DS has no official diagnosis at present, as his intestines appeared "normal" in the endoscopy and only showed elevated lymphocytes, and his antibody tests have come back normal. I do think that the time frame for his damage to occur wasn't long enough for them to see any sort of villous atrophy like they were looking for in part because he only really stopped getting breastmilk altogether about 3 months ago, when my supply switched exclusively to colostrum...right before we started the testing.

We have the same growth curve issues as you seem to, though on a smaller scale. At 6 months, DS was in the 90th percentile for height and 80th percentile for weight. At 18 months, he was in the 50th percentile for height and 8th percentile for weight. Now, at almost 2, he is in the 25th percentile for height and the 2nd percentile for weight. I'm sure that his malaborption issues started between 6-9 months, but he also crawled and walked in that time frame, so it's harder to "prove". I desperately want to get him absorbing again so that he can do some catch up growth. The one thing that sustains me is knowing that his head growth has stayed on curve - even with fat malabsorption, his body is directing what fat he does get to where he needs it most. But it is very frustrating. I hope you get some answers soon.

0

Share this post


Link to post
Share on other sites

Thank you so much. I guess I should add that my DS has no official diagnosis at present, as his intestines appeared "normal" in the endoscopy and only showed elevated lymphocytes, and his antibody tests have come back normal. I do think that the time frame for his damage to occur wasn't long enough for them to see any sort of villous atrophy like they were looking for in part because he only really stopped getting breastmilk altogether about 3 months ago, when my supply switched exclusively to colostrum...right before we started the testing.

We have the same growth curve issues as you seem to, though on a smaller scale. At 6 months, DS was in the 90th percentile for height and 80th percentile for weight. At 18 months, he was in the 50th percentile for height and 8th percentile for weight. Now, at almost 2, he is in the 25th percentile for height and the 2nd percentile for weight. I'm sure that his malaborption issues started between 6-9 months, but he also crawled and walked in that time frame, so it's harder to "prove". I desperately want to get him absorbing again so that he can do some catch up growth. The one thing that sustains me is knowing that his head growth has stayed on curve - even with fat malabsorption, his body is directing what fat he does get to where he needs it most. But it is very frustrating. I hope you get some answers soon.

I believe elevated lymphocytes can be present on scope in breastfed children because they are breastfeeding and not as an indication of anything abnormal, for what its worth. I couldn't confirm that on a quick Google serach but from memory that's what I recall. Not sure how long they stick around after a child is weaned.

0

Share this post


Link to post
Share on other sites

Interesting discussion... I am curious though about the "protective benefits" of breastfeeding in relation to celiac/gluten intolerance.... I was under the impression that gluten would be present via the breastmilk...???

0

Share this post


Link to post
Share on other sites

Interesting discussion... I am curious though about the "protective benefits" of breastfeeding in relation to celiac/gluten intolerance.... I was under the impression that gluten would be present via the breastmilk...???

Unless Mom is gluten free, gluten will be passed via breastmilk you are correct.

0

Share this post


Link to post
Share on other sites

Thanks Mom2... So, my next question is for the moms above... Were you gluten free while breastfeeding?

0

Share this post


Link to post
Share on other sites

Thanks Mom2... So, my next question is for the moms above... Were you gluten free while breastfeeding?

Good question. I was not gluten free--there was no reason to think I should be at the time. (There were pockets of time when was I gluten-free as I've suspected that I have some level of gluten intolerance--but it never seemed to stick, though it has for the last three months, not that it's relevant to your question!)

So, I know that my son was exposed to gluten, both through my breastmilk and through what he was eating (though, he didn't eat much besides avocado between six months and a year). What I wondered was whether the properties of breastmilk could cause the GI system to look normal on a scope (even if things like slowed growth and frequent loose stools were apparent). The question of my son nursing never came up with the GI docs since it would never have occurred to them to think a child his age was still nursing.

0

Share this post


Link to post
Share on other sites

I asked Dr Fassano about this. He said unless there are actually signs of an issue that the benefits of breast feeding outweigh what gluten gets through.

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
      103,337
    • Total Posts
      917,379
  • Topics

  • Posts

    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,472
    • Most Online
      1,763

    Newest Member
    ModernLifeIsWar
    Joined