anonymousplease

I'm not upset with the GFCO, they do everything in their power to protect us. I'm angry with the companies that use their logo without authorization. I'm also upset with the FDA for not requiring that anything labeled gluten-free actually get tested. 

Hi All,

I created a post about this on Reddit today but wanted to share it here as well to get the word out to the community. 

Yesterday's post on Reddit about the update to the Gluten Free Certification Organization's logo brought up a really good conversation about the misuse of the old logo. I recently looked in my pantry and immediately found three different versions of the logo on three different products. I reached out to the GFCO about it and this was their reply:

"Thank you for reaching out. Issues like the ones you have mentioned were a major driver for the update to our logo. If you want to tell me the name of any of those products, we can check to see if they are actually certified."

So then I sent them the name of the companies in question and a picture of the products. They replied again:

"GFCO does not certify any Nature’s Earthly Choice products, so you should treat those as though they are uncertified. We are aware of their logo misuse and are working through our legal team to have this resolved." 

So one of the products I asked about had a fake logo and the other two were legit.

I am livid. I realize that GFCO is doing their best and I am not angry with them just with the misuse of the logo. I had already reduced my diet down to only certified gluten free products and now to find out that the label cannot necessarily be trusted because people copy it fraudulently is a nightmare. Can I get all of the money back that I've spent on these products?! I mean we're talking YEARS and thousands and thousands of dollars here. I'm so angry.

Not to mention all of the mystery glutenings that made me go mad trying to figure out how I could have possibly made a mistake in what I thought was a 100% certified gluten-free home.

Please comment on how this makes you feel.

Link to Reddit Topic

I am pretty fed up with certified gluten free foods made it dedicated gluten free facilities that also use oats.

If you think you've had a reaction to Udi's bread or Glutino crackers you're not crazy. It's happened to me and it took me a long time to figure out the source via process of elimination.

I react to oats the same way that I do to gluten. I'm sensitive to cross contamination and fall into the category of people that can say "even 1 crumb is enough to make me sick." I know not everyone is this way and that we are all different but because of my sensitivities eating Udi's or Glutino products has become a risk. 

Glutino & Udi's products are both made in the same facility as oats with the possibility of cross contamination. I'm sure there are others but I call out these two brands specifically because they are pretty huge in the gluten free community, available everywhere in the United States and make many many products.You might eat their products daily, like I did for a while, and sometimes have a reaction and other times not. But that's the thing about cross contamination...such a small amount can end up in one loaf of bread and not in another, at the same facility, made minutes apart. Cross contamination is accidental. Certified gluten free oats test free from gluten but cause a similar reaction in ultra sensitive people. 

It's a really difficult thing to cut out two brands and all of their products that I have come to rely on over the last 10 years but it must be done if I want to continue to heal.

I encourage others to pay close attention while consuming anything made by these brands if you're hyper sensitive like myself.

I hope that the use of oats in gluten free products dies down a little in the near future, or at least that a label is placed on products declaring that they are made in the same facility as oats.

Knitty Kitty -

Wow thanks!

I know I'm not the original poster on this thread but this was super helpful to me! I have yet to read through everything but off the bat everything you listed here I can relate to. 

When I got a virus last year I started drinking a ton of tea with licorice root in it to coat my throat. After that virus subsided, I was left with asthma and the nightshade intolerance. It's been a year since then but I still suffer from the nightshade issues & very minor asthma (does not require daily treatments). 

Linking these two things with the thiamine deficiency might be a game changer for me. 

Thanks for sharing. 

I apologize for not being more clear - when I said stomach upset I meant my typical gluten reaction that I can feel in my gut.

I don't trust medication that isn't certified gluten free, and none of it is. Obviously I'm banking on this bill being passed and the drug industry being regulated. Until then, I will continue to not trust medication that isn't tested for gluten. 

Unless...there is a good number of super sensitive celiacs that take one kind and have not gotten sick from it. But I have yet to hear that many of us are taking one kind and not getting sick from it. 

If you use the Kirkland brand - what kind do you use? I'm willing to give them a try but there are several options.

https://celiacsavvy.com/celiac-disease-gluten-free/pain-relievers/

I'm really struggling here to cope with menstrual cramps with no certified gluten free pain relievers available on the market. Some are labeled gluten free but are not tested below 20ppm. I used Aleve until I realized it was causing me stomach upset. The same goes for Advil. Advil used to advertise their regular (not gel cap) pills as gluten free but has since changed that status. I found & tried Target brand acetaminophen which is labeled gluten free (not certified of course) and while it has not caused me any stomach upset, it does not work for cramps at all! I suffer them pretty badly each month, it is debilitating, and I'm concerned that I'll be dealing with this struggle for quite some time - which is a very stressful thought. 

Does anyone with celiac disease have any trusted pain medication that they take? Any fellow super sensitive celiac's with recommendations?

Thank you in advanced!

The shortness of breath is an experience I've had from eating nightshades. Some nightshades include:

• Cayenne
• Curry Powder
• Eggplants
• Goji berries
• Hot Sauce
• Ketchup
• Paprika
• All Peppers (including bell peppers, sweet peppers, chili peppers, jalapeños)
• Pimentos
• Potatoes (does not include sweet potatoes or yams)
• Tomatillos
• Tomatoes

It could just be related to celiac disease for you and I would take some more time to heal before experimenting with other diets, but when I cut out nightshades from my diet I noticed the shortness of breath, or rather, the feeling of not being able to take a deep breath, was gone within 3 days. I also have asthma, but that is a completely different feeling. So if your asthma medication did not work for it at all, I think you're right to assume it's not asthma. Also, I would check the ingredients of your anxiety medication for gluten. Often it's difficult for doctors, pharmacists, and even the manufacturers of the medications to know where the ingredients are sourced & whether or not they are gluten free, so you might hit a dead end with this one but it's worth trying. 

Try not to get overwhelmed by this process of going gluten free. There is a lot to learn but there are a lot of us here to help! 

7 hours ago, kanucme2019 said:

It may not be gluten. It may be food allergy.  Have you tried eliminating other foods from your diet?  I have suffered from canker sores in my mouth for years.  I would get 5 or 6 of them at one time and they were very painful.  The dentist thought it might be the toothpaste or the mouthwash I was using.  The doctor thought it was either acid reflex, acidity food or the beer that I drank. Last year I finally figured out what it was and it was chocolate.  I did a lot of research on what causes canker sores, starting eliminating certain foods from my diet and it was definitely chocolate.  I gave up eating chocolate for a year and I have not had any problems with canker sores.  Recently I tried eating a very small piece of chocolate and the next day the sores were back.  I really miss chocolate but it wasn't worth a week of pain in my mouth with all those sores.  

Hey kanucme2019,

Thank you for commenting, I appreciate your input. For me, I'm not searching for the food or ingredient cause, I know my canker sores are directly related to gluten. I'm not currently having an issue with outbreaks or anything like that, just pondering how the gluten can take effect so quickly. I just feel like there is still so much we don't know and explain away based on what we do know, which leads to conclusions that might not be true. I just want the research to continue and go down new avenues. 

Hi All,

Here's a question for you:

If celiac disease causes a reaction in the small intestine, why does my tongue break out in canker sores immediately after gluten touches it? 

Maybe this is silly and I'm missing an obvious reason but hear me out.

I kind of understand why I get canker sores (the bigger ones that last for weeks) a day or two after eating gluten. At that point, the gluten has made it down to my gut, a reaction / rejection has occurred, the damage is done and my system is in it's recovery mode - doing whatever it does, pulling water into my gut to flush it out, producing extra acid in my stomach (not sure why it does that but it does), etc. I always assumed the really bad canker sores had something to do with stomach acid, but not sure. 

I can't understand why canker sores, the smaller ones on the tongue that go away in a day or two, happen almost immediately if the main reactor to gluten is the small intestine. The food doesn't make it down there for hours (I have quite a slow digestive tract). Could there be a reaction to gluten that actually starts as soon as it's inside my mouth? We know a lot about celiac disease and gluten intolerances but we don't know everything. (Another example: we don't know why certified gluten free oats still make some people sick...they're certified! There is no gluten in them. They're similar, is the only answer. Hmm.). We also don't know much about canker sores and why some people get them and others don't or what actually causes them.

I think there is a lot of research still needed and a lot more to figure out. I hate to even say it but could it be something other than the gluten protein? Did we jump the gun on that explanation? Could the gluten reaction start earlier in the digestive process, like during step one - chewing. Could our saliva contain useful information in explaining a cause for gluten intolerance? 

Just some things I think about all day every day.

Sorry I meant to include a link. I was referring to these: https://www.missionfoods.com/products/gluten-free-soft-taco-flour-tortilla-wraps/

I don't have an allergy to Xanthan Gum, ruled it out already but it's a good suggestion. I do my own baking and use Xanthan without issue. I agree there are a lot of mysterious ingredients in these but they are not unfamiliar to me at this point, a lot of them are in many of the processed foods that I eat that don't give me a reaction.  These tortillas give me my very distinct gluten reaction every time. It is a light reaction but it's a reaction. I've thought perhaps it could be the outside of the packaging since they often sit on or next to regular tortillas. But I've carefully washed the package and removed them and put them into another container before consuming. I know the packaging says they are Certified, and I'm not encouraging anyone to avoid them, just saying I know for sure these give me a gluten reaction, I've tested them many many times.

I get "glutened" from Mission's Certified Gluten Free tortillas. I started eating them a couple years ago without issue and then something changed about 1 year ago and they started to make me sick. I've given them 5 or 6 tries since. Gut ache every time. I'm not sure if maybe something happens to them post testing for the gluten or how it's possible for me to get "glutened" by something that is Certified but it's happening. I don't have an allergy to corn or soy. 

46 minutes ago, cyclinglady said:

Thanks so much for sharing.  Your post was not too long.  It is a shame that most of us have had to muddle through the medical system and often find answers on our own.  

Nightshades can cause issues for many.  It is probably one of the reasons they are excluded on the Autoimmune Paleo diet.  I think that with healing, those with celiac disease or NCGS may over come their food intolerances.  I try to avoid night shades as much as possible because they have a higher carbohydrate content and I am diabetic.   Some of my food intolerances have not resolve (like peppers, garlic and onions).  These impact not only my GI tract but trigger my Acne Rosacea.  A sure sign that food intolerances can be systemic.  I do have good news.  My lactose and egg intolerance has permanently resolved.  It comes back if my celiac disease is flaring (due to gluten exposures).  

Thanks for reading. I too recovered from the lactose intolerance. It only comes back when I've consumed gluten but not nearly to the same extent as it did when I was a child. These days its minor gut aches and pains that often lead to nothing. The canker sores for me these days are more of a red flag that I've been exposed. My tongue will break out instantly or I'll get a big nasty one that does not heal for 2-3 weeks. Changing up toothpastes about 6 years ago was a game changer in that department. No SLS for me!

This has been my experience with a nightshade intolerance and maybe it will help some of y'all. I apologize for the length, and thank you if you get through it. 

To preface, I have been gluten free for 11 years but it was not until year 9 that I really started to understand celiac's disease and crack down on eliminating anything that was sketchy from my diet. Sketchy meaning "gluten free" rather than Certified Gluten Free. 

By the end of July 2018 I came down with tonsillitis.  Antibiotics, despite being taken correctly, did not work. They minimized the tonsillitis but it was still there a little bit. In August 2018 came night terrors, leg cramps, and Charlie horses in my calf muscles that would wake me up from my sleep. But for the most part I felt fine.

In October I went to an ENT who told me that I should live with the acute tonsillitis and if I get sick of it, he would perform surgery to remove my tonsils. He talked me out of taking more antibiotics. I started to live with acute chronic tonsillitis as my new normal. It didn't really hurt or bother me so it didn't seem like that big of a deal.

January 2nd, 2019 I came down with a head cold that turned into bronchitis that ended up lasting the entire month. I did every natural thing I could to help my body heal. Coughed myself into some extreme rib pain. Finally recovered from it by the beginning of February.

During the first week of February, one day I got in the shower and felt too weak to stand up. I felt on the verge of passing out. My leg muscles could not be flexed without cramping up. I had pins and needles in my feet. My heart rate was fluctuating and I had chest pain. It goes on for a couple days, on and off. I go to the hospital because we are supposed to leave for vacation in a few days. The doctors are so puzzled by what is happening to me. They test my reflexes and my muscles. All seem normal. They test me for pregnancy, but I was not pregnant. They suggest it is anemia and that I need to eat more spinach and cook it in a cast iron pan. They send me home.

I go to urgent care a day later and ask them to test for anemia but it comes back negative. They too are puzzled and can't offer any good advice except to find a PCP. 

I order travel insurance and head off to vacation feeling like absolute garbage, terrified of what my body is doing. I can barely walk much or stand for long periods of time. Any sip of alcohol and I can barely feel my legs except for the pins and needles. The symptoms are coming and going. While on vacation I'm not eating at restaurants but going to grocery stores and getting raw veggies and fruits. Eating tomatoes like apples. Day 5 of 8 on vacation I get watery eyes and a nose like a faucet. I knew it was allergies and I checked the mattress we slept on. It was covered in mold. I sleep on the couch for the rest of the time and quickly recover almost to 100% normalcy except for lingering stuffiness and the other stuff.

I get home and book a PCP appointment. He is also an internal medicine doctor. He orders a bunch of blood tests and urine tests. They all come back normal EXCEPT for the immune system panel which comes back dangerously low. He tells me I need to see an immunologist to get every shot known to man to vaccinate me. (I said NO WAY). This doctor is also totally stumped by my symptoms and after four appointments and multiple blood tests over the course of two months he suggests it could be MS. After having me take an insulting psychological exam he dismisses me and says "come back in 3 months if you're still having these problems." He knew nothing about celiac disease or food allergies. In my gut I knew my problem was not MS. This was too sudden and I was not displaying the telltale symptoms, in my opinion. I decided not to go through with the MS test and try to experiment by myself on myself first. And by experiment I mean read medical journals and studies until my eyes hurt. BTW, still stuffy in my nose and now have acute chronic tonsillitis and sinusitis for the first time in my life + weakness, muscle cramps, chest pain, brain fog, headaches, fluctuating heartbeat, pins and needles in my feet, and an intolerance to caffeine and alcohol. I started to notice that my symptoms ramped up every day after lunch. I was eating home cooked meals every day for lunch in my own home. They usually involved rice, chicken, veggies or eggs and veggies, always always hot sauce or salsa on top. TOMATOES, JALAPENOS, ETC. It was at this point I linked it to food.

It was June 2019, 5 months after the symptoms started that I learned about nightshades. I eliminated all nightshades from my diet immediately and within three days I felt 100% normal. It is now August 2019, and I've accidentally eaten a nightshade twice and felt the symptoms again within 3 hours. I recovered within 3 days to 1 week.

I started to realize that these symptoms, although much less intense, the weakness, fatigue, feeling like I could faint, feeling jittery like a diabetic person, etc, had been coming and going for my entire life. I can remember being 15 and having a really bad bout of gluten symptoms that put me out of school for 2 weeks. I recovered (somehow despite eating bread and pasta as recommended by the doctor *eye roll*) but then these nightshade intolerance symptoms lingered for a while. I would see doctors throughout my teens to have blood tests for diabetes and anemia and they always came back negative. And many EKG's that always came back normal too. I would get no where with doctors and then the symptoms would vanish and I would forget about them.

The point is that it went away. I had been able to eat nightshades for the past 10 years with little to no problem. 

I'm pretty sure that the nightshade intolerance I currently have won't go away until I heal these other infections that are causing inflammation. This seems to be the worst, most intense and extreme case of it I've had. Maybe it's because I'm 31 and not 15 anymore. Who knows.

I think the nightshade intolerance happens when we're fighting something else, whether it's an infection or inflammation or virus. Perhaps there in inflammation in the gut when it's healing after we've gone gluten free. Just an thought.

I really do think we can recover from the nightshade intolerance because I have before. But it might be something that comes and goes forever. 

1 hour ago, cyclinglady said:

Nuts and peanuts (which are as Ennis pointed out as legumes and not nuts) are common allergens.  Celiac disease (autoimmune) and allergies are under the hypersensitivity umbrella (four types).   When you have one sensitivity, you can develop more.  Overload your immune system and you can trigger any one of these hypersensitivities.  These can vary based on environmental changes.  

If your celiac disease is flaring due to gluten exposures, your allergies or other autoimmune disorders may flare as well.  For example, I have a mild nut allergy to almonds.  Once spring hits, my reaction to almonds increases as my pollen allergies kick in.  If I have been exposed to gluten during this time, my allergic reactions become severe (swelling, hives,  vomiting, etc.)

Research hypersensitivity types and Mast Cell issues (which can be mild or life-threatening).  

Your best defense is to continue to avoid gluten.   See an allergist about your allergies and effective treatment and avoidance.  Consider follow up testing for your celiac disease by measuring your antibodies.  You may be getting exposure to gluten which is compounding your allergy issues.  

Thank you. I've never heard of the Mast Cell issues before. Will research. 

1 hour ago, cyclinglady said:

Nuts and peanuts (which are as Ennis pointed out as legumes and not nuts) are common allergens.  Celiac disease (autoimmune) and allergies are under the hypersensitivity umbrella (four types).   When you have one sensitivity, you can develop more.  Overload your immune system and you can trigger any one of these hypersensitivities.  These can vary based on environmental changes.  

If your celiac disease is flaring due to gluten exposures, your allergies or other autoimmune disorders may flare as well.  For example, I have a mild nut allergy to almonds.  Once spring hits, my reaction to almonds increases as my pollen allergies kick in.  If I have been exposed to gluten during this time, my allergic reactions become severe (swelling, hives,  vomiting, etc.)

Research hypersensitivity types and Mast Cell issues (which can be mild or life-threatening).  

Your best defense is to continue to avoid gluten.   See an allergist about your allergies and effective treatment and avoidance.  Consider follow up testing for your celiac disease by measuring your antibodies.  You may be getting exposure to gluten which is compounding your allergy issues.  

5 hours ago, Ennis_TX said:

Peanuts are legumes, not nuts, and yes tiniest amount and I am vomiting for hours and dry heaving (not an allergy but a food sensitivity or intolerance). I am fine with nuts (almonds, hazelnuts, walnuts, macadamia, brazil nuts, cashews, etc) even coconuts. I find it easier to digest nut and seed butter though or eat foods made with flours made from nuts then whole ones.

You might read up on food sensitivity and intolerance issues, may celiacs get them and it can be to any food. Digestive enzymes might help with your sisters issues, also cooking veggies to mush, blending, or drying into a powder and mixing into foods. But hey I have some random issues with iceberg lettuce also making me vomit no matter what so no room for me to judge. 
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.celiac.com/forums/topic/119919-digestive-enzymes/

Few other thoughts, many times nuts, legumes, seeds are processed and coated with other things for roasting, flavors, and keep them from sticking. You guys could be reacting to these. 
 

Thank you - I edited my post to correct my error about nuts vs. legumes. 

A couple years after being diagnosed with celiac disease, when I was in my early 20's, I lost the ability to digest peanuts & nuts (coconuts excluded). I never had a peanut or nut allergy growing up. One day in my early 20's after eating a bunch of peanuts I developed the worst burning stomach pain I've ever had. It lasted for several hours. Then I started burping up the taste/smell of sulphur. Followed by severe diarrhea and vomiting.

I didn't associate it with the peanuts the first time it happened but over the course of the next few years, after reoccurrences of the same symptoms, always after eating peanuts or nuts, I made the connection. I have had it happen twice without eating peanuts or nuts, and during both of those occurrences I overate and fell asleep too soon after eating. 

Usually the vomiting starts after hours of stomach pain and sulphur burps and contains undigested food. Once, it was pasta I had eaten several days earlier that I threw up whole. 

For the most part I feel that I have the issue under control by not eating peanuts or nuts, and by not allowing my body to be horizontal for at least 1-2 hours after eating a meal. However, I live in constant fear of it happening again because it's so unpleasant that it's traumatizing. 

Strange fact: both my older and younger sister (who are also gluten free), developed the same intolerance around the same time. We all went gluten free around the same age too. None of us had ever had an intolerance to peanuts or nuts before going gluten free.

There remains some confusion about it because it does not happen consistently. My little sister accidentally ate almonds recently and had no reaction. She can also eat peanut butter and nut milks. I am too afraid to try peanuts or any nuts these days, although I can recall not always reacting badly to them as well. My older sister's stomach has gotten so bad that she can't really digest anything other than meat and dairy anymore. Any fiber what so over and she is vomiting. Our guts seem like they are healing since going gluten free, yet all three of us feel our stomachs have been on the decline. I know lower stomach acid is a natural part of aging but we are 29, 31, and 34 years old. 

Has anyone else experienced this change in symptoms? Stomach issues are not my only problem but I'm trying to narrow it down for the sake of this topic being mostly about food intolerances that developed years after being diagnosed with celiacs and going gluten free. 

I'm 31 and I've been gluten free for 11 years. 

Please share your experience if you can relate, or any knowledge you might have.