• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
sandsurfgirl

"gluten Free Is All The Rage Now"

Rate this topic

Recommended Posts

A friend of mine was being supportive and said "Well the gluten free diet is all the rage now. People are feeling so healthy when they do it."

Part of me is thrilled that people are catchign on, there's awareness and lots of products and gluten free menus at restaurants.

Part of me is terrified that people are treating it like a fad, so it STILL will not be taken seriously and the fad will go away when they get bored, maybe go the way of the fat free or Atkins fad, while those of us who have a true autoimmune disorder are still stuck with the disease.

  • Upvote 1

Share this post


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


I have that fear too. On the bright side, it's still pretty easy to find lowfat/fat free products and that craze was a solid 20 years ago so stuff that is popular does linger on the market. I think we'll always have the niche brands like Glutino and Kinnikinnick and with an estimated 1 in 100 celiac rate, there will probably always be celiac-friendly restaurants and businesses around even if it isn't as mainstream in another ten years.

  • Upvote 1

Share this post


Link to post
Share on other sites

It was sweet that she was being so supportive. I live in OC, and people tend to be health conscious and into natural health, etc. so I think there is a lot of awareness of celiac and the diet than maybe in some other places. There are gluten free products everywhere, even at all the regular grocery stores.

But I just don't want people to think this is a fad because for us, obviously, it's not.

  • Upvote 1

Share this post


Link to post
Share on other sites

I think I wouldn't have any problem with a friend making this comment to me as long as they understood that this wasn't just a fad diet for ME. We have to admit that, yes, it is a fad diet for some, but also use that as an opportunity to explain that for many others it is a medical requirement. It's the people that are diagnosed and yet still cheat that irk me. Or the people that suggest that I could cheat because they think it's just a a fad I'm doing. But as long as your friend understands your reasons for being strict, then it's great that she is aware and being supportive.

  • Upvote 1

Share this post


Link to post
Share on other sites

I have to be honest here. I found out I was gluten intolerant by doing a detox. That's a little "faddy" But oh do I feel better. It's life changing. But my husband will make comments like..."Oh, Stacey (me) and her special diet" when in the meantime I've been bedridden from being accidentally glutened, and years of health problems have corrected including hair loss, brain fog, fatigue, rashes, arthritis, major stomach issues etc...

Maybe more people will figure out they feel better off gluten even if they are just doing it because it's "the thing to do" right now.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


I have to be honest here. I found out I was gluten intolerant by doing a detox. That's a little "faddy" But oh do I feel better. It's life changing. But my husband will make comments like..."Oh, Stacey (me) and her special diet" when in the meantime I've been bedridden from being accidentally glutened, and years of health problems have corrected including hair loss, brain fog, fatigue, rashes, arthritis, major stomach issues etc...

Maybe more people will figure out they feel better off gluten even if they are just doing it because it's "the thing to do" right now.

I'm single and have been single for 15 years or so. I date periodically and enjoy the company of others (so I'm not unsocial). When I read so much about significant others, family and friends, being condisending (sp) or not believing we have this disease, it just IRKS me! If you all have asked them to take a gander at this website and commit to spending 2-4 hours (not even that many) reading some of these POSTS, NOT just the info about the disease, but the posts from real people, and they still act that way, i'm so sorry you have to deal with that....well, you don't really HAVE to deal with them...if you know what I mean. There's divorce due to disrespect (and I don't mean to be disrespectful saying that). Divorce (or separation) could be less time spent together with ANYONE (go to a movie where you don't have to talk, a play, a sports event, etc.). Maybe I'm oversimplifying it? My new friends have presented a challenge because I'll suggest we meet for coffee and of course to them it means something to eat too. Just yesterday, she said, "You're not going to make me eat alone are you??" I just said I'm on an elimination diet to find out what the h_ll I'm allergic to. I'll see how it goes from there.

It seems that I have so much to say, but need to edit, edit, edit, before I post because I don't want to offend anyone here...then after all that editing, I need a nap...ha!

  • Upvote 1

Share this post


Link to post
Share on other sites

I hate that it's labeled a "fad diet" but maybe more demand for gluten free products will mean greater production, development and lower prices (and hopefully more product in Canada)!

I guess we just have to keep educating on person at a time :rolleyes:

  • Upvote 1

Share this post


Link to post
Share on other sites

I have to be honest here. I found out I was gluten intolerant by doing a detox. That's a little "faddy" But oh do I feel better. It's life changing. But my husband will make comments like..."Oh, Stacey (me) and her special diet" when in the meantime I've been bedridden from being accidentally glutened, and years of health problems have corrected including hair loss, brain fog, fatigue, rashes, arthritis, major stomach issues etc...

Maybe more people will figure out they feel better off gluten even if they are just doing it because it's "the thing to do" right now.

My guess is that there will be a lot of people that will try this diet because it is the "in thing to do". Some of those people may get very sick when go back to eating gluten and at that point come to realize that it isn't just a fad diet for them. Others will go back to their gluten and be O.K. with it and still believe that it is just a fad.

Stacey, my husband wasn't at all supportive at first but has come a long way in the past eight months. He has started to cook gluten free meals and watches so I am always careful with what I eat. He finally has his wife back after many, many years so it has become important to him, too. At first he thought it was just another one of those things that wasn't going to work, since I have tried so many.

Good luck!

  • Upvote 1

Share this post


Link to post
Share on other sites

Jackay, I agree. And I shouldn't be too hard on him. He's the foodie in the house and he's saved me in restaurants when I ordered a gumbo...he's the one (or was the one) that knows how food's cooked. I'm getting pretty good though. And also, he's seen the vast difference in my energy level and (tmi) how I have no gas/stomach issues anymore, plus he's nursed me during the gluten reactions which are very intense now that my system is clean, so he is supportive. He just has to make comments to family members to make me seem high maintainence (which I can't spell). We've made some great gluten free meals together. It's just extremely new to him (since March 2010). And new to me too.

Share this post


Link to post
Share on other sites

Hey - recently I have had several co-workers make similar comments to me and a few of them are cutting back on their gluten intake. I have mixed feelings about this -- while I appreciate that this means there is some greater access to gluten free foods, I"m also concerned that the seriousness of celiac disease is lost in translation.

Recently I was on vacation in Niagara-on-the-lake, a great little village in Ontario, canada. A tea shop had gluten free food...BUT it was in the same glass cabinet as all the gluten containing muffins, breads, etc...and you could see that cross contamination would be a huge issue. I did not feel safe eating any of the gluten free foods...they were not safe for a celiac, but I'm sure they would have been fine for my friends who are 'trying out' the gluten free diet.

K-Dawg

A friend of mine was being supportive and said "Well the gluten free diet is all the rage now. People are feeling so healthy when they do it."

Part of me is thrilled that people are catchign on, there's awareness and lots of products and gluten free menus at restaurants.

Part of me is terrified that people are treating it like a fad, so it STILL will not be taken seriously and the fad will go away when they get bored, maybe go the way of the fat free or Atkins fad, while those of us who have a true autoimmune disorder are still stuck with the disease.

Share this post


Link to post
Share on other sites


Ads by Google:


Hey - recently I have had several co-workers make similar comments to me and a few of them are cutting back on their gluten intake. I have mixed feelings about this -- while I appreciate that this means there is some greater access to gluten free foods, I"m also concerned that the seriousness of celiac disease is lost in translation.

Recently I was on vacation in Niagara-on-the-lake, a great little village in Ontario, canada. A tea shop had gluten free food...BUT it was in the same glass cabinet as all the gluten containing muffins, breads, etc...and you could see that cross contamination would be a huge issue. I did not feel safe eating any of the gluten free foods...they were not safe for a celiac, but I'm sure they would have been fine for my friends who are 'trying out' the gluten free diet.

That is my worry too. That all these people doing gluten-free on a casual basis because it is 'trendy' are making it look bad for those of us that have Coeliac and need to be zero Gluten.

I have just had 3 days on the couch as a shop sold my hubbie some 'gluten-free' biscuits. ( that were not 100% gluten-free). When he rang back to ask and eventually complain the store owner was like - oh they are not 100% gluten-free but most people do not react to them.... like it was no big deal to eat a gluten-free food that was only 99% gluten-free ..... and had not bothered to train her staff to explain the difference between 99% gluten-free and 100% gluten-free....

If I had bought that biscuit and eaten it immediately before driving the car I could have killed myself by driving off the road. ( I would not eat a new food now before driving but I used to in my early days). As it was I spent 3 days on the couch and been in a lot of pain. Hubbie had to ring back 4x before the store even issued an apology/we will train the staff / store credit....

GRRRRRRRRR...... :angry:

  • Upvote 1

Share this post


Link to post
Share on other sites

I'm not convinced that there are health benefits to eating gluten free, unless you're celiac or gluten intolerant. What's the reason for it?

Seems like it'd be more healthy to concentrate on eating a well-balanced diet that includes plenty of fresh foods. I think the same thing though about "low fat" foods. Studies have shown that people eat more of low fat foods. I'd rather just have smaller portions of my yogurt or mayonnaise with all of the fat.

  • Upvote 1

Share this post


Link to post
Share on other sites

I'm not convinced that there are health benefits to eating gluten free, unless you're celiac or gluten intolerant. What's the reason for it?

Seems like it'd be more healthy to concentrate on eating a well-balanced diet that includes plenty of fresh foods. I think the same thing though about "low fat" foods. Studies have shown that people eat more of low fat foods. I'd rather just have smaller portions of my yogurt or mayonnaise with all of the fat.

I tend to agree. Gluten free is NOT low carb by any means unless you are going low carb. The gluten free stuff has much less whole grain components, more fat and the junk food is just as junky as regular junk food. People who don't have celiac, wheat intolerance, blah blah etc. are better off not being gluten free and getting those whole grains. Barley and rye are especially good if you aren't celiac.

But.... on the other hand.... there is research about gluten causing inflammation in the body, even in non celiacs, so maybe the jury is out on this one.

Share this post


Link to post
Share on other sites

But.... on the other hand.... there is research about gluten causing inflammation in the body, even in non celiacs, so maybe the jury is out on this one.

I went through pretty thorough testing and do not have the genes commonly associated with celiac, so I feel pretty confident that I'm 'just' non-celiac gluten intolerant. I think most of the symptoms that I've had resolve - the bloating, the headaches/brain fog, fatigue etc, are symptoms that I think a lot of people who don't think they have a problem with gluten find resolve when they follow a fad diet like this. Whether it's wheat or gluten, a lot of people feel better when they cut down.

But the symptom most people just doing this as a fad diet wouldn't consider but the one that interests me most is my balance problems. I have consistently failed the Romberg test (where you put your feet together, close your eyes and if you're me, promptly tip over) for years. My GP did a bunch of other neurological tests and didn't seen anything that concerned her so it didn't go any further. But in all my research I kept finding examples of people who tested negative to celiac but showed an improvement to their balance problems when they went strictly gluten free. Since eliminating gluten I get D, stomach cramps and overwhelming fatigue if I get glutened so I've been very careful and I'm confident I'm as 100% as I can be. And it's made a startling difference to my balance. A month ago I re-tried the test and I was better - and I did it again last night and was amazed, it was nearly normal.

So if 1 in 133 people have celiac, and many more know from symptoms that they are gluten intolerant and there are all those autistic kids seeing marked improvement on Gluten-free Casein-free diets and people with MS and then people like me with the balance problems... I really wonder just how many people truly are completely unaffected by gluten*?? Sure a lot of the gluten free products are a lot more refined and sugary than the originals so everyone swapping them isn't idea, but I don't think either they or the originals are vital in our diets. Bread sure is tasty but there are other more nutritious foods. It's popular because it's tasty, pretty cheap, easy to use and filling - it's not vital to anyone's diet, not like vegetables are.

(*Or maybe it's wheat that's the culprit, I might be picking on rye and barley unnecessarily but since I don't at all miss them - never drank beer, can live without malt, all the rye stuff seems to have wheat in it anyway - I don't care to trial them again).

Share this post


Link to post
Share on other sites

I went through pretty thorough testing and do not have the genes commonly associated with celiac, so I feel pretty confident that I'm 'just' non-celiac gluten intolerant. I think most of the symptoms that I've had resolve - the bloating, the headaches/brain fog, fatigue etc, are symptoms that I think a lot of people who don't think they have a problem with gluten find resolve when they follow a fad diet like this. Whether it's wheat or gluten, a lot of people feel better when they cut down.

But the symptom most people just doing this as a fad diet wouldn't consider but the one that interests me most is my balance problems. I have consistently failed the Romberg test (where you put your feet together, close your eyes and if you're me, promptly tip over) for years. My GP did a bunch of other neurological tests and didn't seen anything that concerned her so it didn't go any further. But in all my research I kept finding examples of people who tested negative to celiac but showed an improvement to their balance problems when they went strictly gluten free. Since eliminating gluten I get D, stomach cramps and overwhelming fatigue if I get glutened so I've been very careful and I'm confident I'm as 100% as I can be. And it's made a startling difference to my balance. A month ago I re-tried the test and I was better - and I did it again last night and was amazed, it was nearly normal.

So if 1 in 133 people have celiac, and many more know from symptoms that they are gluten intolerant and there are all those autistic kids seeing marked improvement on Gluten-free Casein-free diets and people with MS and then people like me with the balance problems... I really wonder just how many people truly are completely unaffected by gluten*?? Sure a lot of the gluten free products are a lot more refined and sugary than the originals so everyone swapping them isn't idea, but I don't think either they or the originals are vital in our diets. Bread sure is tasty but there are other more nutritious foods. It's popular because it's tasty, pretty cheap, easy to use and filling - it's not vital to anyone's diet, not like vegetables are.

(*Or maybe it's wheat that's the culprit, I might be picking on rye and barley unnecessarily but since I don't at all miss them - never drank beer, can live without malt, all the rye stuff seems to have wheat in it anyway - I don't care to trial them again).

Now that is fascinating! Good for you for keeping up the diet despite the lack of testing evidence for it.

The guy who diagnosed me treats his RA with gluten free diet. He isn't celiac. He is off RA meds entirely and totally pain free on a gluten free diet.

  • Upvote 1

Share this post


Link to post
Share on other sites

The guy who diagnosed me treats his RA with gluten free diet. He isn't celiac. He is off RA meds entirely and totally pain free on a gluten free diet.

I would put him in the category of gluten intolerant. His body is clearly reacting to gluten.

I guess, then, the question is if Gwyneth Paltrow and others who inconsistently follow a gluten-free diet have a medical benefit from it. I would never discourage someone from abstaining from gluten, but I wouldn't encourage it as a health priority either unless there was a good reason for it.

Share this post


Link to post
Share on other sites

I went through pretty thorough testing and do not have the genes commonly associated with celiac, so I feel pretty confident that I'm 'just' non-celiac gluten intolerant. I think most of the symptoms that I've had resolve - the bloating, the headaches/brain fog, fatigue etc, are symptoms that I think a lot of people who don't think they have a problem with gluten find resolve when they follow a fad diet like this. Whether it's wheat or gluten, a lot of people feel better when they cut down.

But the symptom most people just doing this as a fad diet wouldn't consider but the one that interests me most is my balance problems. I have consistently failed the Romberg test (where you put your feet together, close your eyes and if you're me, promptly tip over) for years. My GP did a bunch of other neurological tests and didn't seen anything that concerned her so it didn't go any further. But in all my research I kept finding examples of people who tested negative to celiac but showed an improvement to their balance problems when they went strictly gluten free. Since eliminating gluten I get D, stomach cramps and overwhelming fatigue if I get glutened so I've been very careful and I'm confident I'm as 100% as I can be. And it's made a startling difference to my balance. A month ago I re-tried the test and I was better - and I did it again last night and was amazed, it was nearly normal.

So if 1 in 133 people have celiac, and many more know from symptoms that they are gluten intolerant and there are all those autistic kids seeing marked improvement on Gluten-free Casein-free diets and people with MS and then people like me with the balance problems... I really wonder just how many people truly are completely unaffected by gluten*?? Sure a lot of the gluten free products are a lot more refined and sugary than the originals so everyone swapping them isn't idea, but I don't think either they or the originals are vital in our diets. Bread sure is tasty but there are other more nutritious foods. It's popular because it's tasty, pretty cheap, easy to use and filling - it's not vital to anyone's diet, not like vegetables are.

What you are describing so well is gluten ataxia. Gluten can attack many organs other than the gut for years before gut symptoms show up, if they do. Doctors unfortunately don't realize this. You can be celiac with no gut symptoms and it sounds like you are someone who fits in this catagory. I think the blood test and biopsy are likely more accurate for folks that have gut symptoms rather than stuff like joint or brain impact so alot of folks that could be helped aren't.

  • Upvote 1

Share this post


Link to post
Share on other sites

I went through pretty thorough testing and do not have the genes commonly associated with celiac, so I feel pretty confident that I'm 'just' non-celiac gluten intolerant. I think most of the symptoms that I've had resolve - the bloating, the headaches/brain fog, fatigue etc, are symptoms that I think a lot of people who don't think they have a problem with gluten find resolve when they follow a fad diet like this. Whether it's wheat or gluten, a lot of people feel better when they cut down.

But the symptom most people just doing this as a fad diet wouldn't consider but the one that interests me most is my balance problems. I have consistently failed the Romberg test (where you put your feet together, close your eyes and if you're me, promptly tip over) for years. My GP did a bunch of other neurological tests and didn't seen anything that concerned her so it didn't go any further. But in all my research I kept finding examples of people who tested negative to celiac but showed an improvement to their balance problems when they went strictly gluten free. Since eliminating gluten I get D, stomach cramps and overwhelming fatigue if I get glutened so I've been very careful and I'm confident I'm as 100% as I can be. And it's made a startling difference to my balance. A month ago I re-tried the test and I was better - and I did it again last night and was amazed, it was nearly normal.

So if 1 in 133 people have celiac, and many more know from symptoms that they are gluten intolerant and there are all those autistic kids seeing marked improvement on Gluten-free Casein-free diets and people with MS and then people like me with the balance problems... I really wonder just how many people truly are completely unaffected by gluten*?? Sure a lot of the gluten free products are a lot more refined and sugary than the originals so everyone swapping them isn't idea, but I don't think either they or the originals are vital in our diets. Bread sure is tasty but there are other more nutritious foods. It's popular because it's tasty, pretty cheap, easy to use and filling - it's not vital to anyone's diet, not like vegetables are.

(*Or maybe it's wheat that's the culprit, I might be picking on rye and barley unnecessarily but since I don't at all miss them - never drank beer, can live without malt, all the rye stuff seems to have wheat in it anyway - I don't care to trial them again).

As Ravenwoodglass said, you very likely have gluten ataxia. Here's a couple articles you might find interesting about neurologic diseases related to gluten in the absence of GI involvement. I'm happy to hear you figured it out!

http://www.ncbi.nlm.nih.gov/pubmed/19406584

http://www.ncbi.nlm.nih.gov/pubmed/19018335

Researchers like Maki think that a lot more people than just folks with a formal celiac diagnisis tend to feel better off gluten. Nobody has a firm number, but I bet it's as high as 1 in 10 among people of Northern European descent who have the genetic tendencies for celiac.

  • Upvote 1

Share this post


Link to post
Share on other sites

This is my POV and this may have been said but I didn't read all the responses. I think people are confusing gluten-free with Low or no carb because of the correlation between breads in general and carbs. I am rather irked that they think this is some fun new toy to play with to loose weight when people like you or me struggle to not eat gluten because we have very painful and embarassing consequences.

HMPH!

  • Upvote 1

Share this post


Link to post
Share on other sites

My issue with the fad diet of gluten-free is restaurants assuming when you ask for gluten-free that you are doing it as a fad and not a medical requirement. I have had 50% of the restaurants (that do not offer gluten-free menu) ask me if I really needed gluten-free or if I was just opting to be gluten-free. And this may seem like are looking at out for me, but the tone and body language isn't that, it's pure annoyance on their end.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


As Ravenwoodglass said, you very likely have gluten ataxia. Here's a couple articles you might find interesting about neurologic diseases related to gluten in the absence of GI involvement. I'm happy to hear you figured it out!

http://www.ncbi.nlm.nih.gov/pubmed/19406584

http://www.ncbi.nlm.nih.gov/pubmed/19018335

Researchers like Maki think that a lot more people than just folks with a formal celiac diagnisis tend to feel better off gluten. Nobody has a firm number, but I bet it's as high as 1 in 10 among people of Northern European descent who have the genetic tendencies for celiac.

Thank you both, and for the links too! Very interesting reading. There are so many pieces to this puzzle.

I fit very solidly in to the Northern European category... I'm of english and irish background. Given my symptoms, I was quite surprised I didn't share the gene. Maybe it'll be clearer after a few more decades of research. I'm only 33 - who knows what we'll know when I'm twice this age.

  • Upvote 1

Share this post


Link to post
Share on other sites

Researchers like Maki think that a lot more people than just folks with a formal celiac diagnisis tend to feel better off gluten. Nobody has a firm number, but I bet it's as high as 1 in 10 among people of Northern European descent who have the genetic tendencies for celiac.

That's a really high number. Thanks, Skylark.

  • Upvote 1

Share this post


Link to post
Share on other sites

I know that before I was diagnosed with celiac, I thought about doing gluten-free for my autistic son, but couldn't bring myself to change so much for something that there was no guarantee would help. Now i have no choice, and its not as hard as I thought, but I think for someone to do this diet just for it being all the "rage", seems like so much work lol. My whole life has been altered, everything has been shifted to another planet and I'm learning how to do things all over again. I probally would have got the gluten-free stuff from the cabinet next to the regular stuff and been proud that I found gluten-free muffins, only to have an unexplained tummy ache and nausea for days after. I do agree that I hope foods become more readily available and cheaper. I have 5 kids, so its cook gluten-free for all or cook 2 meals, I'd rather only have to cook once. We live on chicken, rice and veggies lol :)

  • Upvote 1

Share this post


Link to post
Share on other sites

That's a really high number. Thanks, Skylark.

That's just my own guess from observing friends and family. So far, I have four gluten-free folks among my close friends and three more friends of friends I know of. Counting myself, that's eight and only one is diagnosed celiac. I know three have negative celiac bloodwork.

One of these people might be "fadliac" and he is eating grain-free. The rest have noticeable health problems from gluten. and range anywhere from avoidance to strict gluten-free.

  • Upvote 1

Share this post


Link to post
Share on other sites

I have mixed feelings about this. Oh and it really irritates me when people think it's just a fad diet. I explain to people this is not a "fad diet"(because they say I'm skinny) for me. I do this to survive.

  • Upvote 1

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
      108,917
    • Total Posts
      943,500
  • Member Statistics

    • Total Members
      67,107
    • Most Online
      3,093

    Newest Member
    Mary Scullion
    Joined
  • Popular Now

  • Topics

  • Posts

    • I just saw your profile says thalassemia. My doc blames part of the microcytic anemia on thalassemia trait even though all my thalassemia gene tests have come back negative (and I don't have the right ethnic background). In a way I am hoping it is a FODMAP (carbohydrate) sensitivity instead of a gluten allergy because at least with the FODMAP you just have to stay low FODMAP and don't have to worry about crumbs and gluten cross-contamination like with celiac. I will check back in in 6 months once I see whether there are specific foods I can't eat or if it really does come down to gluten  Thanks for your support!!
    • Good for you for trying to manage your health.  My only suggestion would be to find another doctor.  Obviously, he does not even follow standard recommendations for screening.  I would worry that he overlooks other things too.  It never hurts to get a second opinion.  Second opinions have saved my family from unwanted surgeries and incorrect treatment.   The IgA (Immunoglobulin A) Test, in the case of celiac disease testing,  is a control test.  If he had ordered it, you would have known if the results are valid or not.  Now you are left in diagnostic Limboland.  Again, my TTG was negative it has never been positive even in follow-up testing.   You can go gluten free for life.  My hubby did that 17 years ago some 12 years prior to my diagnosis (per the advice of his GP and my my allergist).  But he will be the first to tell you that I get way more support from family, friends and medical. I wish you well!  
    • Okay so I had a peanut butter milkshake from steak n shake last night. I'm nearly positive that every thing else I've had recently has been gluten free. I have been feeling like my stomach is acting up a bit lately, but after this milkshake it is so much more intense. I considered maybe I'm sensitive to dairy too, but in the last few days  I've had plenty of dairy that didn't make me react  like this. The steak n shake website didn't list any real specifics on ingredients for milkshakes. I read in other forums that some shakes use a malt mix or syrup ( which I didn't see mentioned on the site), but it is corn based. I called the my local steak n shake and the guy said he is "pretty sure" it's corn based.  I called the customer service line and they couldn't tell me if it was gluten free or not. I found ONE listing on a website that said all shakes were gluten free expect peanut butter and one other flavor. I know this seems like a lot for one shake, but I'm so tired of not knowing what makes me sick. Has anyone else had an experience with this or has anymore knowledge about steak and shakes products?
    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
  • Upcoming Events