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Coping With Increased Sensitivity- Any Success Stories?

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I've been struggling for quite some time now with what seems to be an increased sensitivity to gluten. When I was first diagnosed about 5 years ago as non-celiac gluten sensitive, I responded incredibly well to a less than perfect gluten-free diet. That lasted about 1 1/2 years and then I started having problems again. My symptoms are and always have been intestinal distress and diarrhea and the depression that goes along with not feeling well. I have had some success by getting away from processed gluten-free foods and taking more precautions in a very gluten filled kitchen that I share with my family of five. I have not been able to bring myself to make our house gluten free due to not wanting to put my family through that. Any success that I have seems to be only temporary and then things get worse again. Have any of you gone through feeling better, getting sick again and then finding your way back to wellness? If so, I would love to hear your story. I welcome responses from everyone but am particularly interested in hearing from non-celiacs since genetic testing has my doctor pretty sure I am not celiac. Blood testing was negative for celiac, but an Igg score was 84 when anything above a thirty was positive. Never got a biopsy prior to gluten-free diet. The blood work was done prior to gluten-free diet, resulting in the initial diagnosis and prompting the gluten-free diet. The genetic testing was done fairly recently. Sure could use a mentor who has already been down this road. Taking some fairly radical precautions and still not staying well has me feeling a little discouraged.

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How are you doing your family a favor by getting glutened at home?

I understand your thinking (I thought the same) til I realized a sick mom is no good for anyone, I let them get their fixes somewhere else that doesn't involve me. I take that night of no cooking and relax.

And yes, after you are gluten-free people say you become more sensitive. Just how it goes, I guess.

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Let me double check something:

You had a positive blood test, yes? Then tested negative on the genetic tests. Is that right?

If that's true, but only if, from everything I've read, you actually are probably a celiac. The one study I read on gluten intolerance showed that those with gluten intolerance don't get the same antibody respone as celiacs do. Your blood test wouldn't have been positive.

And for the genetic tests, there's a few people here who have mentioned that labs don't actually test for all the genes that can cause celiac disease, just the most common ones. I believe one gal here ended up with one of the rarer genes, so it wasn't showing up in the genetic tests, either. Might be worth your while to find out what genes were tested for, and find a full list of genes.

For my family, we had to go gluten free completely to keep myself and my daughter safe. We were both getting sick frequently with a shared household. And going gluten free, we discovered that my son has issues with gluten too, even though he tested negative: he had symptoms that went away when he ate gluten free.

On top of that, we live in the USA, so our gluten-free food isn't regulated. We ended up calling all our gluten-free companies to make sure they tested their food for gluten. Quite a few of the regular names brands did not do so, so we dropped them. That helped avoid what I now believe were periodic contaminated batches. My daughter also started having problems with foods made in facilities that also processed wheat - not all the time, but periodically my daughter would get sick from these brands, over and over.

So we did a second round of calls, winnowing down our foods to those in gluten free facilities only. That helped some too.

We also discovered that my daughter is an oat sensitive celiac, so some brand names are no good for her because they use gluten-free oats, or they have gluten-free oats processed to near their other foods. Taking care of that helped even more.

We had to change a lot to stay well. We cleaned out the car and scrubbed it down, and no one is allowed to bring gluten into it. We used to have friends over who would bring their own food sometimes, but we would get sick after they came to visit, almost every time, so now we don't allow gluten in the house.

I hate feeling like some kind of gluten Nazi, but honest to God, every time I have a moment where I think maybe I'm being too strict, we relax our standards and start getting sick again. I don't think everyone is as sensitive as my daughter or I, but I do think that sometimes, you simply have to take a deep breath and realize that whether you want it to be true or not, you may need some changes in your environment that require assistance from the whole family.

It helped when I thought of it in terms of what I would do for kids. If one of them was allergic to, say, peanuts, would I make the house peanut free? If they got sick from little amounts, I definitely would. If my child was blind, would I keep the furniture in the same places and make sure all the clutter was picked up off the floor? Of course. When there are physical limitations involved with the family, we adjust, because we're doing it for someone we love, right?

Your family loves you, too. If they were honest, I'm sure they would rather have a healthy, healed parent who will be with them for many more years than have gluten in the house.

Although they might whine about it a lot in the beginning. ;)

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Our family had it a bit easier because it was a very young child that had obvious issues that we were changing our household and lifestyle for . . . somehow that made it "easier" for me. But I am SO GRATEFUL that we followed her lead. We have implemented many of the same things as T.H. - she summarized it up so well! We are positive gene-wise. But serum screenings to date have been "doing really well on the gluten free diet" kind (aka no serum antibodies in the two celiacs screened after years on a gluten free diet). Secretory (stool for us) screenings have been mainly positives with one negative (accomplished by me after getting super, super strict - finally!). My kids take a bit more liberty with "gluten free" processed foods at times than I do - much easier for them to be sick and me take care of them than me get sick - that is when it really sucks - for everyone!! But that all changed quite a bit when our older DD who went gluten free for her sister ended up with multiple hospitalizations for idiopathic complications following a few days of unusual for her consumption of "gluten free" processed foods! And after my family has been able to see how sick ridiculously low levels of gluten make me (and them!), they are fully on board with helping me maintain wellness!

And the success story in this all . . . we had a sleepover for my almost 8 yo DD, and she invited her friends. They are also gluten sensitive, but not as methodical in their gluten elimination as we are. Their dad still eats gluten and had some crackers sitting in the car when he drove them over. His DD told him that he could NOT bring them in our house! I thought that was AWESOME!! We have a very strict gluten free home policy, and I was so happy to have someone else looking out for me (she is 9 yo - pretty awesome, I must say) :D .

Another success story is that in my small town (6500 people), we have found at least two other families with gluten super sensitivity (each of us has different reactions too, and one of the other families has multiple super sensitives)! We also have found others in our community that maintain a gluten free diet, and they respect that some of us are super sensitive (they also like to glean things from the super sensitives to help relieve their nagging issues ;) ). And they all have consistently become more and more gluten free. And it has been really fantastic to have had their support and friendship on this journey.

Since I was "asymptomatic" when I went gluten free for my DD, I was absolutely shocked and horrified when I started getting violently ill with incidental gluten exposure. It was awful. It took me years on the diet to even recognize that this gluten issue was mine to own, not just a convenience for my super duper silly DD. It was shocking and eye opening. I have had tremendous success in the past year helping achieve better management of our condition by building a medical team to work with us. It is definitely a process! And you wouldn't be the first to take your family and home gluten free for the sake of an individual. We are here to support you if you want! And, UGH, I so understand the getting better on the less than perfect diet, having it start to tank (actually mine never tanked like that, it would tank after I implemented more rigid protocols for myself due to my nursing DD!), taking it to the next level, trying to resolve issues (that for me, I never, ever would have guessed were related to gluten, having them finally resolve when I had to get more super strict for my kids, feeling better, having symptoms keep lingering . . . . tweaking our ridiculously strict diet again . . . getting it all better . . . and now, I feel like I am coasting in a really great place *KOW* *KOW*!!! And, um, by "coasting" . . . that wouldn't really be an accurate description of all of the work that I have implemented related to food sourcing!! And the food sourcing chore just never seems to end . . . new season, new food, new supplier(s), changes in manufacturing - never ending stuff . . . must have fun doing it, eh? B)

And, it may be worth noting, my depression associated with gluten exposure is more than just depression from not feeling well, so you may want to consider that the depression is a symptom of the gluten exposures themselves. I don't think that my family feels in any way deprived by living gluten free, as we are eating really, really well and having fun with it. And I love the idea of sending the family out while enjoying an evening to myself . . . but all of my kids are super sensitive, so that never happens for me! I would be rejoicing if I didn't feel so ultimately responsible for feeding all of my kids all of the time on the gluten super duper sensitive diet!! um . . . you may want to consider cleaning protocols if you do send them to the pizza parlor for that evening to yourself. You may just want to send them in to shower, brush teeth and put on pj's when they get home - then snuggle!

Good luck figuring out what works well for you and your family!

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Let me double check something:

You had a positive blood test, yes? Then tested negative on the genetic tests. Is that right?

If that's true, but only if, from everything I've read, you actually are probably a celiac. The one study I read on gluten intolerance showed that those with gluten intolerance don't get the same antibody respone as celiacs do. Your blood test wouldn't have been positive.

And for the genetic tests, there's a few people here who have mentioned that labs don't actually test for all the genes that can cause celiac disease, just the most common ones. I believe one gal here ended up with one of the rarer genes, so it wasn't showing up in the genetic tests, either. Might be worth your while to find out what genes were tested for, and find a full list of genes.

For my family, we had to go gluten free completely to keep myself and my daughter safe. We were both getting sick frequently with a shared household. And going gluten free, we discovered that my son has issues with gluten too, even though he tested negative: he had symptoms that went away when he ate gluten free.

On top of that, we live in the USA, so our gluten-free food isn't regulated. We ended up calling all our gluten-free companies to make sure they tested their food for gluten. Quite a few of the regular names brands did not do so, so we dropped them. That helped avoid what I now believe were periodic contaminated batches. My daughter also started having problems with foods made in facilities that also processed wheat - not all the time, but periodically my daughter would get sick from these brands, over and over.

So we did a second round of calls, winnowing down our foods to those in gluten free facilities only. That helped some too.

We also discovered that my daughter is an oat sensitive celiac, so some brand names are no good for her because they use gluten-free oats, or they have gluten-free oats processed to near their other foods. Taking care of that helped even more.

We had to change a lot to stay well. We cleaned out the car and scrubbed it down, and no one is allowed to bring gluten into it. We used to have friends over who would bring their own food sometimes, but we would get sick after they came to visit, almost every time, so now we don't allow gluten in the house.

I hate feeling like some kind of gluten Nazi, but honest to God, every time I have a moment where I think maybe I'm being too strict, we relax our standards and start getting sick again. I don't think everyone is as sensitive as my daughter or I, but I do think that sometimes, you simply have to take a deep breath and realize that whether you want it to be true or not, you may need some changes in your environment that require assistance from the whole family.

It helped when I thought of it in terms of what I would do for kids. If one of them was allergic to, say, peanuts, would I make the house peanut free? If they got sick from little amounts, I definitely would. If my child was blind, would I keep the furniture in the same places and make sure all the clutter was picked up off the floor? Of course. When there are physical limitations involved with the family, we adjust, because we're doing it for someone we love, right?

Your family loves you, too. If they were honest, I'm sure they would rather have a healthy, healed parent who will be with them for many more years than have gluten in the house.

Although they might whine about it a lot in the beginning. ;)

Thanks for the advice, Shauna. We have opened up the conversation in my family about a gluten free house.. We are going to try some dedicated space first and see how that goes. The genes I was tested for were HLA DQ2 and DQ8. The IgG test is not specifically diagnostic of celiac disease although 20% of people with celiac test positive for those antibodies. According to my doctor, Alessio Fasano with the Center for Celiac Research, some people who do not produce the antibodies detected with the TtG testing, produce IgG antibodies instead when they have celiac. He is the one who decided to go ahead with genetic testing. You are correct, the negative results do not mean that he is 100% sure I do not have celiac. He put the probability against it as about 95%. I guess one of the reasons I tend to doubt that I have celiac is the fact that I recovered so quickly when I started my imperfect gluten-free diet. It only took about 2 days for my intestinal problems to totally disappear. From what I have read, celiacs take some time to heal and recover more gradually. I am sure individual experiences vary. Thanks again for your time. It's great to hear about journeys towards success.

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Shauna

"So we did a second round of calls, winnowing down our foods to those in gluten free facilities only. That helped some too."

Would you be so kind as to list those companies?

Thanks

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I tested negative on the one test for celiac disease that I had, which my dr agreed to do because I have a brother who is diagnosed with it (I have never had genetic testing done though) but have found that my symptoms have gradually improved on a gluten free diet anyway.

In the beginning improvement was very slow partly, I think, because I found out later that I was still consuming foods with gluten or wheat in (it was not in the ingredients list but they were not suitable for gluten sensitive people due to the manufacturing process...in one case it was a vegetable stir fry (with no sauce) of all things causing the problem!). I also found that I was having issues with other foods as well such as fresh sweetcorn on the cob and I recently had a bad reaction to a non food product...a nicotine patch...from which I am still recovering lol. Talk about feeling like death warmed up and having bad diarrhoea! However, I think it might be an allergic reaction in the case of the latter as I have had issues with certain brands of medical adhesives before and I also had a skin reaction to the patch as well as the upset system. I had similar problems with the gum as well (it burnt my mouth and was too painful to tolerate) so it looks like I will have to quit smoking cold turkey lol.

I do have other allergies (duck feathers, anti inflammatories, certain household cleaning products and I also respond badly to other types of medication) so I have never been sure if my reaction to wheat and gluten is a sensitivity, celiac disease or an allergy...

I did try putting wheat back in after going gluten free and had a bad reaction to it 4 times in a row...each time I had bad stomach pains, diarrhoea, acid reflux, fatigue, horrible vertigo, irritability, and nausea and on the fourth occasion some processed gravy actually brought me up into a rash...

Either way I avoid it now and stick to a whole foods only diet. My drs however still continue to put my gradually disappearing symptoms down to anxiety and depression. I still think the issue was and is food related.

Many of my symptoms have improved since my house has been gluten and wheat free etc, and some are still slowly improving, even if I am still not yet 100%.

It is worth making your house completely gluten free if you can as that minimises your risk of exposure. I avoid the stuff like its the plague lol.

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I originally felt so much better just eliminating cereal and bread. I thought it would be easy.

As I got more and more sensitive, I had to cut out more and more things. Reading here helped a lot at first. Back in those days there was no sensitive section and I didn't find any information about super sensitive celiacs. I stayed sick a long time not knowing what else to eliminate from my diet. Based on the information available on this board, everything I was eating was safe.

Finally I came into contact with other super sensitive celiacs and I got some information about shared facilities, and cross contamination. I learned about keeping track of foods and only adding one a week. We also became a gluten free household.

Now I am almost at the 4 year mark. I eat hardly anything processed. I grow much of my own food, spices etc. It's a lot of work, but I am experiencing a level of health that I wouldn't have thought possible before. I am so much stronger both mentally and physically. Still, I have problems with what I'd call "environmental gluten". When I go out, I might get glutened. Dr. Ford's "Gluten Free Planet" idea is the only way I'd be able to be always healthy.

Still, I did a mini triathlon summer before last and I beat a lot of non celiacs! I think that can be considered success!

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I've been struggling for quite some time now with what seems to be an increased sensitivity to gluten. When I was first diagnosed about 5 years ago as non-celiac gluten sensitive, I responded incredibly well to a less than perfect gluten-free diet. That lasted about 1 1/2 years and then I started having problems again.

Non-celiac gluten intolerance is considered to be about 30 years behind celiac disease in terms of research, quoting a researcher from memory. You can find papers published in the last few months that are establishing non-celiac gluten intolerance as a separate disease category.

There's always the possibility that you're sick with something else entirely - candida, bacterial overgrowth, other food intolerances or allergies, etc., or that the less-than-perfect gluten-free diet isn't good enough anymore.

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I originally felt so much better just eliminating cereal and bread. I thought it would be easy.

As I got more and more sensitive, I had to cut out more and more things. Reading here helped a lot at first. Back in those days there was no sensitive section and I didn't find any information about super sensitive celiacs. I stayed sick a long time not knowing what else to eliminate from my diet. Based on the information available on this board, everything I was eating was safe.

Finally I came into contact with other super sensitive celiacs and I got some information about shared facilities, and cross contamination. I learned about keeping track of foods and only adding one a week. We also became a gluten free household.

Now I am almost at the 4 year mark. I eat hardly anything processed. I grow much of my own food, spices etc. It's a lot of work, but I am experiencing a level of health that I wouldn't have thought possible before. I am so much stronger both mentally and physically. Still, I have problems with what I'd call "environmental gluten". When I go out, I might get glutened. Dr. Ford's "Gluten Free Planet" idea is the only way I'd be able to be always healthy.

Still, I did a mini triathlon summer before last and I beat a lot of non celiacs! I think that can be considered success!

Thanks for sharing your experience Steph. You have been a lot of help to me on a few occasions. I definitely do better if I stay away from processed foods altogether. I have been keeping a food diary. I'm one of those thin guys who craves carbs, so processed foods are always calling me. I had a good couple of good days and a really fantastic day yesterday as a result of behaving myself for a few days. Ate some pancakes from my own mix of Bob's Red Mill Flours and had a so-so day today. I thought his stuff was ok, but I may now have to avoid them. Could have been the Rumsford baking powder. Who knows. It would take a lot of trial and error to figure out since there are about 6 ingredients to my pancakes. By a so-so day I mean moving in and out of a jittery kind of intestinal pain. no dia. The good days I have give me a lot of hope that feeling good can be maintained. Just gotta figure it out. Congrats on the Mini Triathalon! It sounds like you have got this thing on the run instead of the other way around. I think you super sensitives could be a lot of help to all of us if you shared some of the products that actually do not bother you. I know everyone's sensitivity levels are different, but things that do not bother the super sensitives would probably work for the majority of us. I have seen a list of test results, but a list of foods you never react to could be helpful to others. What do you have in your pantry? (probably nothing processed, like you said)

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What do you have in your pantry? (probably nothing processed, like you said)

Wegmans tangerine lime sparkling water, Wegmans organic coffee beans, Wolff's whole buckwheat grouts, Metaxa ouzo, Volcano Island white honey, Field Day Mediterranean sea salt, Bariani olive oil, Ithaca Milk Co. dairy (milk, cheese, and butter), Black Jewell popcorn, Nature's Earthly Choice quinoa, but it has to come from a particular dedicated facility. In the east, where I live, the facility is mixed, so I have a friend ship it from back west. I can also manage bananas, Wegmans organic carrots, pork packaged at the meat distributor, and shrimp and scallops directly from their shipping containers.

I've been doing a lot of gardening for more produce, and I can manage some things at the farmer's market.

It's a short list, but I'm more sensitive than most.

I had to cut out BRM early on, but I have a sensitivity to oats.

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Wegmans tangerine lime sparkling water, Wegmans organic coffee beans, Wolff's whole buckwheat grouts, Metaxa ouzo, Volcano Island white honey, Field Day Mediterranean sea salt, Bariani olive oil, Ithaca Milk Co. dairy (milk, cheese, and butter), Black Jewell popcorn, Nature's Earthly Choice quinoa, but it has to come from a particular dedicated facility. In the east, where I live, the facility is mixed, so I have a friend ship it from back west. I can also manage bananas, Wegmans organic carrots, pork packaged at the meat distributor, and shrimp and scallops directly from their shipping containers.

I've been doing a lot of gardening for more produce, and I can manage some things at the farmer's market.

It's a short list, but I'm more sensitive than most.

I had to cut out BRM early on, but I have a sensitivity to oats.

Thanks. I wish I had a Wegman's near me. I live near Richmond, VA. There are Wegman's north of here. So you do ok with corn? I have been staying away from it, but I am not sure I really need to. I have trouble with oats too.

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Thanks. I wish I had a Wegman's near me. I live near Richmond, VA. There are Wegman's north of here. So you do ok with corn? I have been staying away from it, but I am not sure I really need to. I have trouble with oats too.

I would drop all Bobs Red Mill products. I am one who reacts to gluten free oats and I react to all BRM because of the gluten free oat contamination. Last Jan. I ate at a dedicated bakery that used BRM products. Ugg..I reacted terrible!

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So you do ok with corn? I have been staying away from it, but I am not sure I really need to.

I have problems with processed corn, but not corn itself. I bought a big drum of corn and there is about one wheat berry per quart. Not wonder I have problems with processed corn!

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I would drop all Bobs Red Mill products. I am one who reacts to gluten free oats and I react to all BRM because of the gluten free oat contamination. Last Jan. I ate at a dedicated bakery that used BRM products. Ugg..I reacted terrible!

Any luck with other brands?

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I would drop all Bobs Red Mill products. I am one who reacts to gluten free oats and I react to all BRM because of the gluten free oat contamination. Last Jan. I ate at a dedicated bakery that used BRM products. Ugg..I reacted terrible!

Thanks for posting that about BRM. I just purchased two of their products, one being the chocolate chip mix. I had already decided to return it because it contained soy. I have Hashimotos too and SOY is out for me. No one should consume soy unless it is fermented (my opinion). Now I am returning all of their products. Great tip!

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I've been struggling for quite some time now with what seems to be an increased sensitivity to gluten. When I was first diagnosed about 5 years ago as non-celiac gluten sensitive, I responded incredibly well to a less than perfect gluten-free diet. That lasted about 1 1/2 years and then I started having problems again. My symptoms are and always have been intestinal distress and diarrhea and the depression that goes along with not feeling well. I have had some success by getting away from processed gluten-free foods and taking more precautions in a very gluten filled kitchen that I share with my family of five. I have not been able to bring myself to make our house gluten free due to not wanting to put my family through that. Any success that I have seems to be only temporary and then things get worse again. Have any of you gone through feeling better, getting sick again and then finding your way back to wellness? If so, I would love to hear your story. I welcome responses from everyone but am particularly interested in hearing from non-celiacs since genetic testing has my doctor pretty sure I am not celiac. Blood testing was negative for celiac, but an Igg score was 84 when anything above a thirty was positive. Never got a biopsy prior to gluten-free diet. The blood work was done prior to gluten-free diet, resulting in the initial diagnosis and prompting the gluten-free diet. The genetic testing was done fairly recently. Sure could use a mentor who has already been down this road. Taking some fairly radical precautions and still not staying well has me feeling a little discouraged.

I actually have celiac disease and I don't believe that the reaction to gluten is any different in celiacs than those who are non-celiac gluten intolerant. The obvious reaction to gluten is what most people focus on, however, because exposure can be "silent" you are still damaging your precious body. I would turn my entire kitchen and house gluten-free and not think twice about it. I have a 12-year old who does not have celiac disease but was delighted to join me on our new lifestyle. Gluten-free was the best Rx I never had. Make the transition simple: meat, seafood, fruit, vegetables, soaked seeds - all you want. You can eat well without eating anything from a box ever. Good luck to you and your family. A new life of wellness, happiness, challenges and victories await you. One day you will look back and say "living gluten-free is the easiest thing I have ever done in my life" I know I did!

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Any luck with other brands?

Ener G, kinnikinnick, Betty Crocker-gluten free, King Arthur-gluten free, Glutino. Mostly I eat lots of fresh meats, fruits and veggies.

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    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.

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    • Grief is natural and something we have to get through and it was a few years for me. First i just stopped seeing fast food joints. To me they were empty lots. I stopped watching tv with commercials. Thank you Roku, Netflix, Amazon and HBO. Those helped. Dietitian didnt give me anything i didnt know. Read some Celiac and Nutrition books.  Things got easier when the hubby agreed the house should be gluten free. No cross contamination and no temptation. Love my crock pot and rice cooker ( going to buy an instant pot next). Hate to cook. Love fresh fruit. Steam veggies in glass bowls in microwave. Boil up dozen eggs always on hand. Found gluten free crackers and popcorn on Amazon. Just search gluten free. Key is to make a bunch of food then freeze it in meal sizes. Always having food cooked or fresh on hand helps cravings. And find favorite snacks to look forward to. All said and done the gluten-free non processed food diet has reversed my heat disease and lowered my diabeties risk. All bad numbers are normal and being 50 that is great.
    • You really do need to get tested. The earlier you catch it the less likely serious and permanent damage to your body will occur. One of the Celiac associated medical problems is osteopenia/osteoporosis because of poor mineral absorption. 
    • Yeah here you can read into getting diagnosed, if celiac then you can rest assured you know hte cure and it will just take time with the gluten free diet. The newbie 101 thread will have many of your answers. Might be worth keeping a food diary just for references for now, and if you intend to get tested you need to be eating gluten sadly.
      https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
      https://www.celiac.com/forums/topic/91878-newbie-info-101/

      I used to get sick more often when eating gluten...but if you immune system is fighting one enemy on the front line it gives way for something else to sneak past it and hit you hard. So yes I would say so.....I hardly ever get sick now days with a virus.....food intolerance, reaching my personal tolerances for ceratin types of foods in a meal, or some other random quirk normally makes me sick...but these are normally just purge and go on sick....not painful for hours.  
    • I have zero energy. And headaches  
    • Well I respond really bad to sugar, starches, and carbs a few years after my celiac diagnosis with UC ....not diagnosed diabetic, but when I tried cheating and eating some hashbrowns...I started feeling like I was on drugs, and my glucose monitor showed 419........

      SO I now eat low carb with a high fat/protein diet (keto/atkins) and have developled sugar free treats...bit high in subsitutes but I do have recipes for several and have posted some here, like my Almond Butter Pecan Pie, Lemon Ricotta Scones...been playing with almond butter/sunbutter cookies and have 3 versions...still not quite satisfied to sell them yet. I have also came up with low carb flat bread recipe and a vegan grain free cheezy bread recipe I can share.
      PS both my parents are diabetic......adopted not celiac...they were well....carby bread lovers and sort of brought it on. But I cook for them now often with paleo meals low on carbs.
      IF YOUR son get a craving for low carb pizza, English Muffins, Tortillas, Pasta, Rice, etc. Look at the following companies.
      Miracle Noodles, Makes pasta, noodles, read to eat meals, rice...all low carb diabetic safe
      Mikeys Muffines makes tortills, english muffins, etc low carb
      Califlour Foods makes pizza crust....bit like a flat bread pizza but better then nothing I use the plant base crust....you can even make them in to chips.
      Protes Makes low carb Nacho chips, BBQ Chips, Chili and Lime chips that are great....avoid the salted caramel ones they burn them.
      Zevia Makes a type of knock of soda that works best with a tiny bit of splenda zero in it.
      Lakanto makes sugar free maple syrup, and some of the best sugar free chocolate bars.
      Anything else I can help point you through. I know the frustrations and spend most my life trying to invent and find foods that are safe. I also have recipes I post that are often low carb and gluten free on the reicpe blog here. Good luck and glad you and your family are working this out together.



       
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