A Gluten-Free Diet May Not Stop Gut Inflammation for all Celiac Disease Patients

Blood tests are not a good test of smaller amounts of cross contamination. Such small amounts could still cause major inflammation in the gut.

I don't think any study has ever used a stool sample (the only reliable way to test for gluten cross contamination) for more than two or three days before the actual study took place.

The study calls the results they found "damage" but cells can also signal to each other or react to oxidative stress in there environment. A poor diet can also cause changes within a cell. 

Also 19 people is an extremely small sample size. 

My supermarket says they cannot guarantee that the raw meat they are selling is gluten free. And I know I react to lots of other foods too which I have cut out of my diet including all dairy, eggs, flax, corn and all the grains... There's still many meats I can't eat like turkey (and I've tried turkey from different stores + different brands but I only get reactions) but I don't react to turkey on the IgG test or as IgE. So I should be able to eat it at least once in awhile but I can't. So I don't know if it's hidden Gluten or corn or something else?

And I react to airborne stuff too! Even outside. I keep going back to the allergist but I don't get anywhere as everything turns up negative. But I certainly get burning eyes, itching, sometimes that pukey feeling from restaurant fumes when I'm outside. I would just like to know what it is I'm reacting to. I react to perfume and laundry detergent too.

And my hair is continuing to fall out like crazy. My doctors can't even agree if I have celiac or not, but I think I do. I have the gene and I got so super sick from eating wheat for a few days. I did what my allergist had told me to do: to eat 3 normal servings of wheat a day for 10 days before the blood test. I only ate it for 4 days because my arms were going numb and I was so sick with tons of symptoms. I'm still not fully recovered from that and it was in early July of 2019..

The supermarket should at least be able to garantee that meat is free of Gluten! I get most of my calories from meat. Because I'm stuck on low FODMAP and most of the things on that list I can eat, well, it's low calories...and I'm underweight.

And I haven't had any appetite since I ate that wheat. Just burping all the time. The burping just never went away. I think my stomach is full of gas.

Unless it is proved that fresh meat is a source of gluten exposure by way of what the animals have been eating I do not think supermarkets should be burdened with the task of guaranteeing the fresh meat they sell is gluten free. Many fresh foods are gluten free just by the nature of what they are. I suppose a person could take the extra step of washing their steaks and chops before cooking if they fear cross contamination from cutting and handling the fresh meat by supermarket personnel. But if fresh meat is causing GI symptoms I suspect the reaction is to something other than gluten.

Besides that, if supermarkets start claiming things they produce/process are gluten free it opens the door wide for litigation if someone manages to prove otherwise. From a business standpoint, that is just not smart unless you are seeking to meet a niche market need and are willing to pay for all the testing and all the precautions and to invest in a dedicated gluten free processing facility that would ensure that gluten free standards are met.

A while back, I posted something on this forum about a conversation I had with someone at the farmers' market about cows eating wheat and then me eating the meat of that cow, and how she said technically that meat is not gluten free. I was corrected on here. At the time of the conversation at the FM, it struck me as odd and not quite right. It still doesn't seem right, so I don't worry about it.

12 hours ago, trents said:

 

Besides that, if supermarkets start claiming things they produce/process are gluten free it opens the door wide for litigation if someone manages to prove otherwise. 

 

Quite a few supermarkets label the things they produce as gluten-free. Most of those products are store-brand, but manufactured off-site.  For store-made products, they sometimes do the "gluten-free, but..." sorta thing for cross-contamination. But Wegmans, for instance, says their entire sushi bar and deli areas are gluten-free.  

13 hours ago, Guest sarah said:

My supermarket says they cannot guarantee that the raw meat they are selling is gluten free. And I know I react to lots of other foods too which I have cut out of my diet including all dairy, eggs, flax, corn and all the grains... There's still many meats I can't eat like turkey (and I've tried turkey from different stores + different brands but I only get reactions) but I don't react to turkey on the IgG test or as IgE. So I should be able to eat it at least once in awhile but I can't. So I don't know if it's hidden Gluten or corn or something else?

And I react to airborne stuff too! Even outside. I keep going back to the allergist but I don't get anywhere as everything turns up negative. But I certainly get burning eyes, itching, sometimes that pukey feeling from restaurant fumes when I'm outside. I would just like to know what it is I'm reacting to. I react to perfume and laundry detergent too.

And my hair is continuing to fall out like crazy. My doctors can't even agree if I have celiac or not, but I think I do. I have the gene and I got so super sick from eating wheat for a few days. I did what my allergist had told me to do: to eat 3 normal servings of wheat a day for 10 days before the blood test. I only ate it for 4 days because my arms were going numb and I was so sick with tons of symptoms. I'm still not fully recovered from that and it was in early July of 2019..

 

The supermarket should at least be able to garantee that meat is free of Gluten! I get most of my calories from meat. Because I'm stuck on low FODMAP and most of the things on that list I can eat, well, it's low calories...and I'm underweight.

And I haven't had any appetite since I ate that wheat. Just burping all the time. The burping just never went away. I think my stomach is full of gas.

 

 

 

Sarah, has your doctor prescribed a potent anti-inflammatory?  It sounds like your system is so keyed-up that it's just pinging any little thing.  

In the past 7 yrs, I've begun to develop a reaction to nightshade veg. I didn't figure out what was setting me off until just this past November. And let me tell you: nightshades are in EVERYTHING, hiding on ingredient lists as "natural flavors" and "spices".  But when I'm super-super vigilant, my symptoms go away. But if I eat a packaged food that lists those terms and that I have not called the company to confirm--for each and every single product--then I'm likely getting things that are on my blacklist: potatoes, tomatoes, eggplant, goji berries, and all peppers.  (Plus, separately, gluten.) 

After giving away almost my entire pantry, I retained a few things that were questionable. And I keep testing them out. Last week was Boar's Head's new breakfast sausage. "Spices" likely contains paprika or another pepper varietal, but you can't see it by looking at the label.  

 

22 minutes ago, sc'Que? said:

Sarah, has your doctor prescribed a potent anti-inflammatory?  It sounds like your system is so keyed-up that it's just pinging any little thing.  

This makes sense to me. In my experience there are many things I can eat without problems but if I eat too much of them or too often they upset my system. I've been working on trying not to fall into food ruts.

On 3/15/2021 at 5:18 PM, Guest diagnosed with problems said:

I was diagnosed in 2010 and continue to have diarrhea and now constipation issues no matter that I adhere to a strict diet and have had proof of villa renewed.  Why some people continue to have T cell activity could be due to other autoimmune diseases? I also have RA. 

what is RA ? 

RA=rheumatoid arthritis.

On 3/17/2021 at 10:43 AM, Guest Randall said:

You might want to start looking at other common things that Celiac sufferers have problems with like dairy. I have problems with: dairy, sorghum flour (causes a laxative effect within 20 minutes with me), and eggs.

Guest Randall,

IF sorghum is a problem for you....you might of develop Pellagra...

In India it is common for people to develop Pellagra when eating Jowar aka Sorghum...

Here is the research on it...

Entitled "Endemic pellagra among jowar (Sorghum) eaters"

Open Original Shared Link

Everybody say's it is because Wheat is not as low in Niacin as corn.....and why Pellagra only shows up in a Corn heavy diet....but that is not true.

If similar GI problems show up in Wheat eaters.....it is automatically diagnosed as Celiac disease instead...

The real difference is because Corn has high leucine levels interfering with Niacin synthesis in your body presenting as Pellagra (SKIN) issues....

Here is the research on it entitled "Inhibition of Tryptophan → Niacin Metabolism by Dietary Leucine and by Leucine and 2-Oxo-isocaproate in vitro"

Open Original Shared Link

What heavy wheat (gluten) eaters will go one to develop is Pellagra Sine Pellagra instead or Pellagra without Skin Issues.

My latest Posterboy blog post explains  how this is so....

Maybe it will help you  too read it.

I hope this is helpful but it is not medical advice.

Posterboy,

On 3/18/2021 at 10:57 PM, sc'Que? said:

Sarah, has your doctor prescribed a potent anti-inflammatory?  It sounds like your system is so keyed-up that it's just pinging any little thing.  

In the past 7 yrs, I've begun to develop a reaction to nightshade veg. I didn't figure out what was setting me off until just this past November. And let me tell you: nightshades are in EVERYTHING, hiding on ingredient lists as "natural flavors" and "spices".  But when I'm super-super vigilant, my symptoms go away. But if I eat a packaged food that lists those terms and that I have not called the company to confirm--for each and every single product--then I'm likely getting things that are on my blacklist: potatoes, tomatoes, eggplant, goji berries, and all peppers.  (Plus, separately, gluten.) 

After giving away almost my entire pantry, I retained a few things that were questionable. And I keep testing them out. Last week was Boar's Head's new breakfast sausage. "Spices" likely contains paprika or another pepper varietal, but you can't see it by looking at the label.  

 

No my doctor hasn't prescribed anything because they don't know what my problem is. One doctor thinks I have celiac the other says I don't. They keep sending me to the allergist for IgE but it keeps coming back negative. I have autism and all my joints are hypermobile. I seem to have chemical sensitivity too as I react to perfume, laundry detergent scents, etc. Sometimes I get burning eyes 1000 feet away from restaurants, from what they are cooking. But I don't know what it is on their menu I am reacting to and the allergist expects me to tell her what things to test. I do my best but it all keeps coming up negative so I'm just stuck. Other doctors blame my problems on my "thoughts" or they say I have dry skin (but my skin is super soft). So I can't go anywhere really and I react to too much stuff. I can't take anything either. I can't take any over the counter stuff as I only react to everything. Last time in 2019 I tried the most natural ingredient wise cough drop I could find at a health food store, I ended up with a swollen jaw from it. So I can't take anything except ACV in water. Luckily since I went grain free I don't really get sick anymore. By sick I mean colds or flu. I guess my body is too busy fighting scents in the air. The stuff smells nice but my body hates it.

I did have long term exposure to black mold at my mom's house for years. And I definitely fit into the hypermobility spectrum disorder. Of course all of this stuff is undiagnosed.

I mean how am I supposed to know what it is I'm reacting to in the fumes from a restaurant when I've never even been inside these places?? The allergist doesn't help at all. And I've had those GI doctors tell me I'm crazy. But then why do I test positive for numerous foods on the IgG??

I know they have discovered that autism is an all body problem. It's not just your behavior. It's gut problems. I've only had my primary care doctor for a year and she doesn't seem to realize that both autism and being hypermobile increases your odds for gut issues.

I know I react to something on turkey but it's not the turkey itself because that didn't show up on the IgG. So I don't know.

And if I try to add more stuff to my diet, I get symptoms and I get constipated for a few days. Most of the time I still have the weird feelings in my feet and legs too. The neuropathy. It had gone away for a few months but then it had returned. I cut out eggs, milk, etc in November.. when I cut that out my Pots like symptoms went away, which is good. And I'm taking a grain free multivitamin.

When my primary care doctor had tested me for celiac I had been grain free for 5 months and the test came back with a score of "20" for the wheat. The other numbers were normal. That score confused her. She asked one gastro about it and he said I had celiac. Then later she changed her mind and said I had NCGS. Then a different gastro said the whole test was invalid because I was grain free for 5 months. This was in November of 2020. Because I had gotten so super sick from eating that wheat for my allergist and I still hadn't recovered from July 2019.

But I've was having food issues for years even before that. I didn't have a doctor though so I was just cutting stuff out of my diet.. if it IS celiac I probably had undiagnosed celiac for 20 years..

My mother had the same issues and reacted to the same stuff too.

The last time I saw my allergist - a few weeks ago - she told me to buy a bag of that saline solution and to put drops of it in my eyes so other people cooking fumes won't burn my eyes. I'm not going to do that! There's nothing wrong with my eyes. My eyes only burn when I'm around certain things, like restaurants or some scent. Otherwise my eyes don't bother me. It's the fumes, not my eyes. Plus I react to plastic too. Saline comes in plastic. I've been reacting to plastic for at least a decade. I first found out long ago from dasani water. The plastic made my ankles get swollen and painful. I tested it with tap water in the plastic bottle (dasani bottle) and the same thing.. I get itchy from red inks (like on boxes or note paper).. just tons of stuff. I called dasani up and they said it was sugar based plastic. This was years ago...

These days I drink filtered water. And only from glass.

Since July 2019 I'm pretty much only eating a whole foods diet. I don't eat anything processed at all - unless you count the fact that the raw carrots are inside a bag? I eat grass fed meat, organic bananas, organic carrots, everything is very basic. Nothing is processed except in the most basic way. 0 spices. I can't get any more basic unless I start growing my own stuff. Which you can't do in an apartment. 

Truthfully I don't know what I have. I did get awful sick from wheat and I have the celiac gene, so I think I do have celiac. But if I have something else as well, who knows? My doctors can't agree on anything. And I refuse to take anything because I react to everything! I mean if I got a swollen jaw from a little cough drop and an air freshener made my face red + swollen... Taking anything is just not safe. Besides it need to be corn free and they hide corn in everything! In the past I had gotten itchy face from people cooking corn. And I had gotten burning hives for 2 hours from brushing against wild oats growing in a weedy field while I was taking photos of wildflowers.

I wish I could figure out what is making my hair fall out. Or why I have gas for so long.

Hi Sarah,

It sounds like you may have celiac to me.  You can go 100% gluten-free free now without any other tests.  No need for a doctor's permission slip.

Some of us react to oats as well as wheat, rye and barley.  Plus dairy (lactose) is often a problem at first.  One thing to note, you won't find celiac disease with an IgE allergy test.  Celiac is related to IgA, and IgG antibodies, not IgE.