Beverage

I contacted Moms Across America and found out that the lab used in this study was Health Research Institute Labs - https://hrilabs.org, and they used the Romer Agrastrip Gluten G12 test, which is highly accurate at detecting the 33-mer peptide of gliadin down to 4ppm. The scientists at HRI carried out the tests in duplicate to ensure accuracy and reproducibility of the results, so I trust that their results are accurate. 
I have also reached out to each company in the study for comment that had too high gluten measurements per the FDA or GFCO, and so far none have replied.
This will be covered in a future article.

Please get back to us. I hope every organization advocating for celiacs is made aware of this study and starts putting pressure on these entities for some answers and some change.

Good questions, and we're trying to find out more about what lab did the testing for the study, and we've also reached out to the GFCO for comment.

The sad thing about all this is that it severely erodes the trust that those in the gluten intolerant/gluten sensitive community have in food companies and in gluten free/GFCO labeled products in general. How much do these labels really mean? Makes me think I might have been a little judgmental toward my "super sensitive" fellow celiacs. It may not be all in their heads after all.

Wow! Thanks for this, Scott! We use those Banza chickpea noodles a lot. So much so, I've been complaining to my wife that I'm getting tired of them. Now there is a better reason to avoid them.
But this article is extremely revealing. Glyphosate has gotten a bum rap for years and really it is the misuse of it as a drying agent to accelerate harvest time that is the real problem. Food companies need to put their feet down and only buy agricultural products from producers who do no use glyphosate in this way. And consumers must hold their feet to the fire for this to happen and there also needs to be some government regulation enacted to outlaw this practice.
But the other shocking thing from this article is the deception in advertising or laxness in testing or both of companies producing gluten-free products. What can we do to stop this. Is a class action suit in order here?
There is another layer to this and that is it would seem to me that the GFCO folks need to be brought to task. We've got to do something here as a community. We need to stand together. Our health is at stake. Who knows how many celiacs are failing to experience healing because they are using these products that contain high levels of gut damaging agrichemicals and/or exceed standards for gluten-free status.
Scott, can you reference a source that glyphosate contributes to gluten intolerance. This is new information to me.

I agree with @trents  You'll have much better results with a no gluten diet. 
Also consider other sources that could possibly be sneaking in that may not be so obvious as eating it. I've had some surprise glutenenings by petting pets that eat gluten (they lick themselves and then you pet them, and then it's on your hands).
The doc that diagnosed me really emphasized that eyes, ears, nose, and throat all lead to the same place, so be aware of possible airborne gluten.  I got really sick feeding my neighbor's chickens (grains in the feed, the chickens kick it up and it's in the air, I breathe it in, nose drains down to stomach...). Also home projects got me, cutting plywood and demo of old plaster board that possibly have wheat in the glues that hold them together. 
It's not easy, but it does get easier.  You'll feel better with staying gluten free.

I agree that supplementation can help.
The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.
Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.
 
 
 

Uh. @&€!&.
I just had French fries from a local place. They had no gluten. But I notice a response. My belly hates me again. It always does, but now I notice the difference. Turns out frying in oil that had gluten snacks before is also a problem. 

Welcome to the forum, @Seekingthelight!
No, you should not begin the gluten free diet before all testing for celiac disease is complete. Inflammation begins to subside, antibody levels begin to decrease and the villous lining begins to heal. Obviously, this will affect test results and could easily result in false negatives in both the blood antibody testing and the endoscopy/biopsy. Have you already had antibody testing performed and now are awaiting possible endoscopy? Or, have you not had any testing done at all?
The good news is that there is still time to effect a reliable "gluten challenge" if you are willing. Gluten challenge guidelines are a bit in flux at this point but evolving in a more aggressive direction. The current thinking is that you need to consume at least 10g of gluten daily (the equivalent of approximately 4-6 slices of wheat bread) for at least 2 weeks before testing. Since you are over a month out before your gastro appointment I would suggest starting the gluten challenge now just to make sure the testing produces valid results.

This is not my experience at all. I refrigerate or freeze all my gluten free breads. Is that what you are doing?
Also, yes a diet full of processed gluten free foods (especially ultra processed) is not good for anyone. That's why it's best to emphasize whole vegetables, fruits, and meats, and limit breads, crackers, chips, etc. There's a gluten free bakery in my neighborhood. Their breads are terribly unhealthy! I do think oftentimes sugar and salt are added to make up for or disguise the different "mouth feel" of gluten-free options.

I recommend nuts.com for nuts and dry beans. They have a gluten free section. I've never had an issue with their gluten-free stuff. I'll soak and cook a big batch of beans, then freeze in smaller portions to use in recipes. 

I applaud you for being so conscientious. If it gets on her lips, she's ingesting it by simply licking her lips.  I stay away from wheat germ oil in all products. 
For me, one of the worst things when I get glutened is wracking my brain for what the heck did it. Making sure all body products for both of you are labeled gluten free helps tremendously to figuring out the culprit.
Lots of alternatives. Try pure argan oil, Shea butter, or coconut oil, as long as she doesn't have nut allergies. Even though these don't contain gluten, I'd still make sure they are still labeled gluten free to be sure no cross contamination or gluten derived additions.

I suppose I should also introduce myself.  My name is Steve.  I was first diagnosed at age 14, by an allergist.  She did not use the word "celiac."  What she said was "Don't eat wheat at all, ever."  I was not told about the effects.  This was before the internet, and before any "Gluten-Free" foods were available.  I went to the library and read cookbooks and found no information.  I asked my regular doctor, and he had nothing to tell me.  I had always felt bad, though, and here was a concrete thing I could do something about.  But as I said above, I "cheated."  I continued to eat pizza, eggrolls, and pasta.  And I felt nauseated and my head hurt and I felt logy all the time.  I would stop eating wheat for two days and "save it up" for a big night of pasta at a restaurant.  I thought whole wheat was okay.  I thought barley and rye were okay.  I would buy oatmeal cupcakes and think they were okay.  I knew nothing.  And I felt bad all the time.  I started getting serious about it after about 15 years, but never 100%.  Then the internet became a thing, and I found some info.  Finally, after a few decades, I got a biopsy, waited two weeks, then went back for a diagnosis and was told, "yeah, you have celiac, look on the internet," and the doctor literally walked me out of his office.  Since then, every doctor I've seen is vaguely aware of celiac and has nothing to say except to not eat wheat.  I had to do research on my own to learn just how serious celiac is, how the villi get destroyed, how even the tiniest amount of wheat can harm you and make you feel terrible.  I was glad to find out that numbness of the extremities is a symptom of celiac, because my fingers always got numb, and it seemed so odd and disconnected a symptom, but it is real, so in a way it was further confirmation of the celiac.  I'd say I'm about 99% off wheat, barley, rye and oats (yeah, I know some processed oats are okay, but I just don't eat any), but last week I accidentally stirred some rice that previously had been used to stir pasta, and all the symtoms came back for three days  I felt horrible, enervated.  So that's it.  100%.  And I'm glad I found this site, which you'd think I would have done sooner.  I guess I thought I was okay!

For sure. We talked about nuts and beans. Too many are processed on equipment that is contaminated. So I’m careful about all that. 
I just started looking into body products. 

I've been glutened by thinks marked gluten free, but with the warning about shared equipment. Contacted the company, similar clean out process to what you describe. I don't eat anything labeled that way anymore.

No, @Wheatwacked, sunshine doesn't help DH, it makes it worse!  
Japanese don't have the same DH pathology and genes as other Celiacs with DH...
Dermatitis herpetiformis in Japan: an update
https://pubmed.ncbi.nlm.nih.gov/11834848/
Dapsone was originally used to treat leprosy.
Niacin Vitamin B3 in the form that causes flushing called nicotinic acid (NOT the same as nicotine in tobacco) helps immensely with DH.  The flushing, though uncomfortable at first, goes away as you take Niacin (100 mg) regularly.  Do NOT take extended release Niacin.  It won't have the same effect.   Also DO take a B Complex supplement for the other B vitamins needed to work with Niacin.  
Consider Gliadin X for those occasions when eating out! 

Welcome to the forum, Kirbyqueen!
Try cutting down on your iodine intake. Some celiacs who suffer from the DH rash report that this helps a great deal.
The one medication that seems to really work for the DH rash is dapsone. 

I take Thiamine, Pyridoxine, and Cobalamine for pain relief.  I have back pain due to broken vertebrae and this combination of vitamins relieves the pain without side effects of pharmaceuticals.
Thiamine, Pyridoxine and Cobalamin are vitamins that are water soluble and safe.
References:
Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review
https://pubmed.ncbi.nlm.nih.gov/35156556/
Nutritional and Metabolic Imbalance in Keratoconus
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8876314/
Corneal Crosslinking With Riboflavin and UVA Light in Progressive Keratoconus: Fifteen-Year Results
https://pubmed.ncbi.nlm.nih.gov/36736417/
 

Since Jan of this year my health went in a downward spiral.  My whole life I have had one issue after another.  I am somewhat familiar with autoimmune diseases because my youngest daughter has been sick her entire life.  She has been tested for a million things.  Because her father’s side has autoimmune issues. No doctor never diagnosed her.  It would have saved us 30 years of hell.  That being said.  I believe this is what we all have.  My oldest daughter diagnosed bi-polar, then Kerataconus.  I am in a total brain fog now.  With memory failure and lost 20 pounds in one week.  Leg cramps(killer) even my thighs.  I have had just about every symptom.  That being said,  I took a flexeral today and feel better.  Started gluten free diet then I had to check for hidden gluten.  I don’t like taking any pharmaceutical drugs.  I am looking for something to relieve the muscle cramps that isn’t a drug that really works.

Welcome.  I ate at restaurants and people's homes for many years after I was diagnosed, and I felt bad a lot.  For years.  I considered it cheating, but it was not worth it.  Restaurants and friends may mean well, but they're correct when they tell you that they can't guarantee anything.  I had a girlfriend who would get angry when I looked at ingredients lists on food she was preparing and she'd say "Do you think I'm trying to poison you?"  My own mother would say "Oh I just put in a little bit of flour, it's not much."  But it has to be ZERO.  Don't play around!  If you had a friend on crutches who couldn't climb stairs to get in to a restaurant, would you say, "C'mon, it's just a few stairs, it's no big deal, suck it up!"?  No.  A true friend would not say that.  Also, once you make it ZERO, it's a relief, because you don't have to play around or fret about socializing, or wonder if you can get away with just feeling a little bad.  That part is over.  

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly are vitamin D, Thiamine, Choline, and Iodine.
10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri. Choline 500 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom? Iodine – speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash. Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS." Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.). Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine. Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

Yeah I feel a lot better already just talking on here! Yeah I completely agree! Well I’ll keep you posted if I get anymore answers from my GP in terms of next steps. 
 
Coeliac disease really is an evil little body destroyer that needs to be stopped (other than just stopping eating gluten) by some remedy. We’d all be rich if we had the answer!!
keep posted with how you get on with your ct results!

Sounds like you are in the UK. With blood numbers that high, I thought docs in UK would give an official diagnosis without the biopsy. You should ask about that, so you can get support faster.  I'd try to find and print out anything that supports that in your country, get another appointment and take all of it with you.
Even in the US now, some docs are doing this, my 19 year old step granddaughter got an official diagnosis here in US with just blood results a few months ago.

My 16 year old daughter has Celiac and had an incredible experience on our family safari.  I was nervous about traveling so far from our gluten free staples.  I researched this trip over a few years and a few tour companies. We finally felt comfortable.  We were amazed that our tour guide and the lodges he picked were so knowledgeable.  They knew proper food handling and often would substitute baked goods using cassava flour and others.  We were amazed at the options she had and the care and concern all showed.  
Chris Samwel of I Dream of Africa was recommended by a dear friend who had taken her family (3 sons) on safari July 2023. We went to Tarangire, Ngorongoro, Lake Masek and Central Serengeti. Christopher planned the perfect itinerary -we truly wouldn't have changed any of our lodging choices and we saw such diversity in topography and animals. We loved the majestic 2700 yr old Baobab trees speckling the Tarangire, the lush Jurassic Park' like feel of the Ngorongoro, the giraffe sculpted acacia trees in Lake Masek, and the Great Plains of the Serengeti. We saw lions, huge herds of elephants (200+ elephants), the migrating herds of wildebeest and zebra, giraffe, hippos, hyena and so so much more! Chris worked with each location to be sure my daughter had gluten free celiac safe options. We can not say enough good things about Chris Samwel and I Dream of Africa!  

@cristiana
hi! 
the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past