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Vision And Celiac

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I just read on another forum that a person

gave up wheat and had an improvement in her

vision.

Has there been any research on the relation of

gluten and vision?

This is important to me as I have 2 sisters with

macular degeneration. If there is a relation I want

to send them the info.

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I just read on another forum that a person

gave up wheat and had an improvement in her

vision.

Has there been any research on the relation of

gluten and vision?

This is important to me as I have 2 sisters with

macular degeneration. If there is a relation I want

to send them the info.

Yes there is a corelation,I read an article about it ,weeks ago,but don t have the link.

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That sounds interesting.

I hope someone can locate the article. There are times my vision is perfectly clear and other times can't read street signs and my eye site is sooooo poor. Can't understand the 'changes' I'm so light sensitive now and wasn't before. notice posts about that here also.

love any info others can share.

Judy in Philly

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I just read on another forum that a person

gave up wheat and had an improvement in her

vision.

Has there been any research on the relation of

gluten and vision?

This is important to me as I have 2 sisters with

macular degeneration. If there is a relation I want

to send them the info.

Man, that's interesting. My daughter's grandmother has that - said it's hereditary in that family. I'm really trying to steer my daughter into the wheat free life. Me with celiac disease and being half swedish, and then her dad's family is definitely from an Irish extraction and half of them complaining of stomach problems. She already has PCOS so I'm wondering if she's in for more problems.

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If you have antigliadin antibodies and antiperkinje cells, not only do they cause destruction of the perkinje cells in the cerebellum of your brain, but they can also cause destruction of the perkinje cells in your retinas -- causing a whole host of problems. (I have double vision in the left eye, have started going color blind and night blind at 43). Amazing what that nasty gluten does, huh?

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Macular degeneration is hereditary. I work for an eye doctor and I asked him about it because my sweetie's mother has it. She is nearly blind now at 85. The doctor said there really is nothing you can do other then stay as healthy as you can, eat right, and have regular check-ups. He says the vitamins they advertise for it really do nothing--that was why I talked to him because Kev wanted to know what he thought about the vitamins that Paul Harvey advertises for macular degeneration. Deb

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Hmmmm.... very interesting Post here on the Vision & Celiac~

I just had to go into "bifocals" this last Summer, and of course, there is always eye changes as a person ages... (so says the Optomotrist!) But in the last couple of months or so, I have noticed that my eyes seem to be getting bad again, & I'm having some trouble *seeing.* There's alot of "blur" and I don't focus as good as I was doing when I first got adjusted to my new bifocal eye-glasses.

Being gluten-free now, I haven't noticed much of a change, other than my eyes aren't cooperating for me like they should be..... I'll probably be going in for a check-up & eye Exam in the Spring again. Just to see if my eyes have changed any. I have heard that being "gluten-free," is suppose to definitely HELP the eyes. Gee, I hope so!!! {I'm still learning here!} I'll have to talk with my Eye Dr. about Celiac & see what his "take" is on it~

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Hmmmm.... very interesting Post here on the Vision & Celiac~

{I'm still learning here!} I'll have to talk with my Eye Dr. about Celiac & see what his "take" is on it~

I'm still learning too. It is very interesting that this topic caught my eye. Tomorrow we are taking our daughter to be checked for dyslexia because the optition doesn't know why her vision is blurred when she reads and wants to rule out dyslexia before referring her back to the Eye Clinic at the local hospital. What is the actual effect of the perkinje cells in your retinas -- causing a whole host of problems. Do you have any links you could share tiredofdoctors? or tests that could be run to rule it in/out??

I asked the optition about the possibility that the celiacs have visual problems but as usual with anyone in the medical profession she hadn't got a clue.

This gluten thing really is a can of worms isn't it?

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I know when I eat gluten it changes the way I see, I am a full time student and there I times I can't see three rows in front of me!

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This gluten thing really is a can of worms isn't it?

You sure have that right Donna

I'd still have her ck'd for dyslexia however. Our son had that and is now 31 and we didn't even know what celiac disease was back then..He did have alot of allergies, milk shrimp cats mold pollen etc --He might even still have it -- I was dx'd 6 months ago so still all of these 'connections' are still new to me too.

Love to hear what the eye dr.s thoughts are.

Would love to see that article too.

Judy in PHilly

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I hope someone can locate the article. There are times my vision is perfectly clear and other times can't read street signs and my eye site is sooooo poor. Can't understand the 'changes' I'm so light sensitive now and wasn't before. notice posts about that here also.

love any info others can share.

Judy in Philly

I can relate as my vision is good some days and other days is very poor. I blamed it on Laser surgery, but now that I have been diagnosed with celiac disease, maybe there is another reason. I hope the gluten free diet helps. I haven't been gluten free long enough to tell yet.

Let me know if your vision improves.

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We had the tests and she does have 'Moderate Dyslexia', "Short-term memory and phonics cause the most problems Significant reading difficulty. Very weak at Maths.

Strongest element is Verbal, and she's only just average in that. "

She is in the second highest stream for English and maths at (2 of 4) her school, god help the poor kids in 3 and 4! and it is one of the best schools in our area.

I was very shocked which surprised me. I was hoping I was wrong. Although I had read up and it and did a couple of on-line mini tests which did show problems, for years and years all her teachers (and a private english tutor) told me she absolutly did NOT have dyslexia, I was just comparing her to her exceptionally clever sister ( Straight As) and I was being unfair!

The weird thing is that she is much, much better being gluten-free. I hate to think what the results would have been in the summer when she had to eat Gluten for the biopsy. I do think that there must be some neurological damage to her brain/eyes though as reading past school reports shows a gradual decline in her grades and reading age conmpared to her actual age.

So now I must sprit my time between you lovely people and my 'new' friends on the Dyslexia forum :lol:

Donna

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..., I haven't noticed much of a change, other than my eyes aren't cooperating for me like they should be.....

That's so much like me (and my mum before me..). I suspect that, as with other gluten damage, some may be permanent - especially if you consider Perkinje/neuro cells. But if it stays as it is - for me that's a hope.

I know of 2 cases affected by ataxia who also have eyesight damage, one of them has gone blind over the years. They have never been tested for gluten/celiac, but have signs of malabsorption which could be gluten related.

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That's so much like me (and my mum before me..). I suspect that, as with other gluten damage, some may be permanent - especially if you consider Perkinje/neuro cells. But if it stays as it is - for me that's a hope.

I know of 2 cases affected by ataxia who also have eyesight damage, one of them has gone blind over the years. They have never been tested for gluten/celiac, but have signs of malabsorption which could be gluten related.

With now going "gluten-free," I'm hoping for the best! :rolleyes: I've always had bad eye-sight, and with age, it is a known factor that your eyesight does get worse... all I can do is watch my diet and keep my Eye Exams up to date, & go from there~ I'm hoping there's no permanent "gluten" damage... gee, if so, then I'd be wearing "coke-bottle-SIZED" eye-glasses!!! :P:P:P

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I'm hoping there's no permanent "gluten" damage... gee, if so, then I'd be wearing "coke-bottle-SIZED" eye-glasses!!! :P:P:P

Hey! I resemble that remark!!!! but I've had bad eyesight way before developing celiac. And the age thing isn't helping either. But so long as I can see a beefcake calendar or a SALE! sign I guess I won't worry.

:P

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Guest Robbin

I'm pretty new and I know this thread has been up awhile, but I am extremely upset since, along with all the other problems I've been having, I have been slowly losing my sight (over about 2 years) It's gotten really bad in the last year. I've always had bad eyes, but this is very blurred vision in one eye and double vision/blurred in the other. My "good" eye is now 20/60 with glasses and I am unable to drive at night because of night blindness, too. I only drive within a 6 mile radius of my home and I have to pay particular attention to the sun/weather. I have been to a total of 6 specialists. They are stumped. myopia of unknown cause. Some said "Well, as we age, our eyes aren't what they used to be" !@#*& ! I am only 45! My father-in-law was 93 when he died and had better eyesight than I did when I was 43! My mom has diabetes, high blood pressure, cataract surgery and has better eyesight than mine! I think I am stumbling onto so many answers, but I AM SO SCARED. I am going through so many different tests and health issues related to this disease that are so hard to handle. I think my next step would be to a neurologist? Does anyone have any experience with severe double vision in one eye or both? Sorry for the pity-party here.

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I went for an eye exam in Jan. and my eyes had improved dramatically. I had a baby last April and the doctor said that it probably improved during pregnancy (although I didn't notice it then) I never considered the 4 mos. of the gluten-free diet could have done it at that time. I've worn glasses for 22 years and they had only gotten worse, even after the birth of my first child. It could have been the 2nd pregnancy, but now I wonder if it wasn't the diet. very interesting. :huh:

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Very interesting! I've always had problems with my eyes! My vision is something like 20/140 and has been since I was about 8. They put me in hard contacts when I was 10 to try to stop the rapid change in my vision. It worked. I haven't had any rapid changes since then. However I have night vision problems, blurred vision that comes and goes, and very dry eyes. My eye doctor sent me to a speicalist about a year ago for a thyroid test because my eyes were so dry. He said if I was 60 he wouldn't be that alarmed, but since I'm 25 he felt it was pretty unusual. My thyroid was fine, and I haven't been back to my eye doctor since then so I still don't know what that's all about.

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Guest Robbin

This is so interesting to me and thanks for the info everyone. I can't get a correction in my right eye, but I am hoping the diet will slow the progression in my left so I can at least drive around town. The trouble is distortion more than anything. I can't read signs, which is annoying, but I see what problems people who don't know the language and are illerate go through. I just had an exam with a new dr. that came highly recommended and he is going to refer me to an eye surgeon. The retina specialist is stumped because the retina is ok. I have a gazillion floaters. Does anyone have tons of floaters, too? I've had them since childhood, but I also believe I've had celiac since childhood, too. I am so hoping the gluten-free diet works some miracle for this too. The D and the rash are gone after 20 yrs, so I consider that pretty amazing anyway. Thanks again, you guys are the best.

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I have been having vision problems for the last 2 1/2 years. They could not find anything wrong. Then late last summer it got worse and I saw the optomologist and he said it was dry eye related to my Morphia Scleroderma. Then 3 weeks ago my blurred vision got VERY WORSE and the optomolgist still said it was related to the scleroderma. Today I saw my Morphia Scleroderma doctor and it is not that. He said I had to see a Neuro Optomolgist NOW. I have an appointment tomorrow morning with one. I just hope they can stop whatever is happening before I can't drive. I no longer drive anywhere that is not close and familiar. I can't read signs anymore at all, nor see my husband's face when he is 8 to 10 feet away from me. I also have to see a Rheumotologist for my cold hands and feet. He also said that he wants me into one this week. He thinks I have some neuropathy damage and it is progressing too fast. One auto-immune disease (Celiac) begets another (Morphia Scleroderma) and begets another and another. So far I am handling this well. I will wait to see what these additional doctors have to say before I fall apart. Oh, today's doctor also said that Celiac itself does not cause the vision problems, but that the Malapsorption does. And that would probably depend on how long and genetics. I hope I got all this information right.

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Guest Robbin
I have been having vision problems for the last 2 1/2 years. They could not find anything wrong. Then late last summer it got worse and I saw the optomologist and he said it was dry eye related to my Morphia Scleroderma. Then 3 weeks ago my blurred vision got VERY WORSE and the optomolgist still said it was related to the scleroderma. Today I saw my Morphia Scleroderma doctor and it is not that. He said I had to see a Neuro Optomolgist NOW. I have an appointment tomorrow morning with one. I just hope they can stop whatever is happening before I can't drive. I no longer drive anywhere that is not close and familiar. I can't read signs anymore at all, nor see my husband's face when he is 8 to 10 feet away from me. I also have to see a Rheumotologist for my cold hands and feet. He also said that he wants me into one this week. He thinks I have some neuropathy damage and it is progressing too fast. One auto-immune disease (Celiac) begets another (Morphia Scleroderma) and begets another and another. So far I am handling this well. I will wait to see what these additional doctors have to say before I fall apart. Oh, today's doctor also said that Celiac itself does not cause the vision problems, but that the Malapsorption does. And that would probably depend on how long and genetics. I hope I got all this information right.

Armetta, OMG, you sound exactly like me. What is an neuro-optomolgist? I really hope you keep posting on your condition. Facing a future of not being able to drive is sooooo upsetting, I know. I am scared of harming myself or others it is so bad. I live in an area that doesn't have a lot of physicians, and since my dear husband has to take off work to drive me everywhere, it is frustrating. Went all the way to Baltimore to a so-called specialist at a so-called-world-class institution and got no answers-was made to feel like I was a waste of time. He said I just needed new glasses, measured my eyes and got mad acting when I said I couldn't see the chart with the lenses he had up. A dr. I just saw last week (recommended by a friend) said that the measurements on the machines are not right because I have major distortion, so he is getting all my records and trying to find someone to help me. Keep me in your prayers--you are in mine too. Keep me posted!! I may have to fly out to AZ to get help if your dr. helps you. I have friends in Tucson.

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I saw the Neuro-Opthamolgist today. It was such a long drive, but well worth it. Of course my hubby had to drive and then twiddle his thumbs eating breakfast somewhere (poor baby). He really does not mind-thank goodness. But, the news was very good. After a couple hours of many different tests, the majority that I had never had before, the doctor gave me his expert opinion. I need to change my prescription in my glasses and I have a severe case of dry eye. I am to stay on the RX for that and also use the OTC ones more then 4 times a day. I am especially to use the OTC drops before getting on the computer or reading a book. It will take time for the RX one to work. He also took photos' of the eyes for future reference, just in case I end of with a Neuro problem with them due to the Celiac. But, he really did not think this would happen. A Neuro-Opthamologist also looks behind the eye at the nerves to see if there is neurological damage. I was in his office three hours and only about a half hour was spent filling out forms and waiting. The rest was with tests and him. I have just had a regular opthamolgist exam and he said that there was no need to change my glasses as the change was so slight. After all the tests, this doctor then gave me a regular exam and I could not believe how different my vision was when he flipped all those eye thingies. I was really scared that I was going to go blind. This was such wonderful news.

I hope this helps you Robbin. I saw this doctor in Phoenix, which would be about 2 hours North of Tucson. I live in the very East Valley and we drove about 70 minutes. If you do decide you want the name of this doctor PM me. I was really impressed.

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Guest Robbin

Congratulations! I am so glad you have been helped. Not many things as scary as blindness, in my opinion. I have had 4 different optomotrists, a retina specialist, and an opthalmologist check this out in the past 1 1/2 -2 years and was giving up until my good eye started getting so much worse, so I hope this guy I saw finds a way to help me. I am still in the "waiting for records to be sent" mode. A trip to AZ would be a good excuse to see my dear friends there too, so if this dr. doesn't pan out, I may visit your guy. Something like this just doesn't "happen". I am afraid it may be from long term misdiagnosed celiac. If so, gluten free will halt it, I hope. Was your dr. experienced with celiac?Thanks-God bless! Robbin

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I also work in the optical field and there is definate proof that lutein and lycopene can help prevent some eye diseases or make their symptoms more bearable. I'm thinking that since we have malabsorption issues we may have missed a lot of the nutrients that are eyes need to stay healthy. (Unfortunately for macular degeneration, after a certain point there is nothing you can do but in the beginning or if it's in your family-eat spinach!)

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    But what does the science say? The latest Nima article and Gluten-Free Watchdog’s complaint both focus on the science, so let’s start there.
    Nima makes two different food sensors: one detects gluten, the other detects peanuts. Each sensor comprises a small, handheld electronic device and a cartridge. To test food, consumers place a pea sized amount into the cartridge, place the cartridge inside the sensor, and run the device.  They then receive a smiley face or wheat symbol with "gluten found," depending on whether or not the Nima device detected the allergen.
    Nima reported their original data in a peer-reviewed scientific journal. Among the conclusions: “Compared with reference R5, Nima antibodies (13F6 and 14G11) had 35- and 6.6-fold higher gliadin affinities, respectively. Nima demonstrated device performance using a comprehensive list of foods, assessing detection sensitivity, reproducibility, and cross-reactivity. Nima presented a 99.0% true positive rate, with a 95% confidence interval of 97.8%–100%.”
    Gluten Free Watchdog says that:
    “Based on third party testing data, the Nima Sensor fails to detect gluten at the 20 ppm level over 20 percent of the time. It isn’t until a sample contains a level of gluten at the 40 ppm level, that a gluten found result is received close to 100% of the time.” Gluten Free Watchdog suggests that this is a problem, because:
    “At a level of gluten in a sample from less than 2 ppm up to a level of gluten between 30 ppm and 40 ppm, the result displayed on the Nima Sensor may be either smiley face or gluten found. If a sample is tested with a Nima Sensor and the result is a smiley face, there is no practical way for a consumer to know if the level of gluten in the sample is less than or more than 20 ppm. If a sample is tested with a Nima Sensor and the result is gluten found, there is no practical way for a consumer to know if the level of gluten in the sample is less than or more than 20 ppm. As a result, the data point received from the Nima Sensor for gluten presents major interpretation problems.” Gluten Free Watchdog charges that Nima uses “NOT the scientifically validated Ridascreen Gliadin R5 ELISA Mendez Method from R-Biopharm used by Gluten Free Watchdog.” The fact is that R5 Elisa remains the industry standard for most testing applications. 
    Gluten Free Watchdog closes its warning with a word from their independent expert: According to Adrian Rogers, Senior Research Scientist at Romer Labs, “It could be argued that the device is not fit for purpose as the company states that there is a clear differentiation between safe and unsafe products based on a 20 ppm level which the validation data does not corroborate.”
    It’s worth noting that for all his accomplishments, Rogers is neither a doctor, nor a PhD. Rogers' LinkdIn page lists his education as: Bsc (Hons), Microbiology, University of Wales, Aberystwyth. A Bachelor of Science degree may not necessarily make an expert in this subject, yet he is presented as one.
    Rogers also seems to have a potential conflict of interest that was omitted in Thompson’s press release. Directly from Rogers’ LinkdIn site:
    “Romer Labs®, Inc. developed an immunochromatographic lateral flow assay for the qualitative detection of gluten in raw ingredients, processed foods, finished food products, and environmental surfaces, using the G12 antibody developed by Belén Morón. The G12 antibody targets a 33-mer peptide which is resistant to enzymatic digestion and heat denaturation, as well as being the fragment of the gliadin protein to which celiac disease sufferers react, making it a reliable analytical marker.” The company Rogers works for, Romer Labs, makes its own gluten testing kits. It seems a bit disingenuous for Gluten Free Watchdog to use a spokesperson from a potentially competing company to try to counteract a peer-reviewed scientific publication for a device which is made by a potential competitor.
    Nima’s Scientific Advisory Board includes some of the most highly respected celiac disease researchers and scientists in the world. They include: Peter HR Green, MD Phyllis and Ivan Seidenberg Professor of Medicine. Director, Celiac Disease Center at Columbia University; Jody Puglisi, PhD Stanford University Professor of Structural Biology; Lucille Beseler, MS, RDN, LDN, CDE, FAND Family Nutrition Center of South Florida; Benjamin Lebwohl, MD, MS Director of Clinical Research Celiac Disease Center at Columbia University; John Garber, MD Gastroenterology, Mass General; and Thanai Pongdee, MD Consultant, Division of Allergic Diseases, Mayo Clinic.
    Nima says that Gluten Free Watchdog’s view of their recently published validation is incomplete and misleading. Nima wrote:
    “All the studies show Nima is highly sensitive across a range of both low and high levels of gluten." "The Nima third party data accurately reported gluten found at 20 ppm and above between 93.3% for food as prepared (a food item that is spiked with an intended quantity of gluten) and 97.2% for food as quantified by an ELISA lab kit (used to determine the exact ppm of gluten in the food)." "The Nima peer reviewed study published in the Food Chemistry Journal reported gluten found at 20 ppm and above at 96.9% accuracy." The statement that:
    “'Nima will fail to detect gluten at 20 ppm 20% of the time' is almost entirely driven by 1 specific food out of 13 tested. That sample, when quantified, was actually below 20 ppm." "In real life, people get glutened at many different ppm levels, not just 20 ppm. Nima has been shown to detect gluten at levels below, at and above 20 ppm across a variety of foods in a number of studies.” Reading the peer reviewed data provided by Nima, and reading Gluten Free Watchdog’s complaints, it becomes clear that Gluten Free Watchdog’s complaints sound serious and authoritative, but ring a bit hollow. 
    Consider the Following Analogy
    Imagine a gluten-sniffing dog that performed as well as Nima in scientific trials; same performance, same exact data. 
    You can give this dog a sniff, or a small bite of food, and he can signal you if the food’s got gluten in it with 97% accuracy at 20ppm or below. Nearly 100% accuracy at 40ppm or above (as stated by Gluten Free Watchdog).
    People would think that the dog was not only cute and fluffy, but wonderfully helpful and everyone would love it, and everyone with celiac disease would want one. And it would be a great big gushing warm and fuzzy feel-good story. Pretty much no one would be arguing that the dog was potentially dangerous, or somehow unfit for people with celiac disease. Such dogs would also be far more expensive to own and maintain than the Nima device. Apparently such dogs can cost upwards of $16,000, not including the cost of food, vet bills, etc.
    So, what’s the accuracy rate of a gluten-sniffing dog, anyway? From Mercola.com: Willow, a German shorthaired pointer, is another gluten-sniffing dog, in this case living in Michigan. Her owner, Dawn Scheu, says she can detect gluten with 95 percent to 98 percent accuracy. She worked with a trainer (the same one who trained Zeus) to teach her own dog to detect gluten, with excellent results.
    Gluten-sniffing dogs may detect gluten in amounts as small as .0025 parts per million with 95 percent to 98 percent accuracy. So, will Gluten Free Watchdog be warning against gluten-sniffing dogs anytime soon?
    Somehow, because Nima is a mechanical device made by a company, it's not so warm and fuzzy, not so feel-good. Maybe Nima needs to shape their device like a cute little doggy, or a Pez candy dispenser?
    But the data remains, as does the fact, whatever its drawbacks, anything that detects gluten like Nima does, as well as it does, is potentially very helpful for celiac disease in numerous situations. And it is extremely unlikely to do them any harm.
    Nima seems very much committed to transparency, scientific excellence, and continual product improvement. These are noble goals and generally a win for people with celiac disease. Think of it, just ten years ago, a portable gluten-sensor with the kind of accuracy Nima is reliably achieving would have been the stuff of fantasy. Yet here it is. More accurate than any gluten-sniffing dog, and for a couple hundred bucks. People with celiac disease are living in a very different world than just a few years ago.
    Nima did not have to publish its data, but it chose to do so, and in a reputable, peer-reviewed scientific journal. Nima conducted its research using solid scientific standards, and reported those results publicly. They explained their methodology and results, they acknowledged product limitations and expressed a commitment to improvement. How is this remotely controversial?
    The celiac disease community is fortunate to have companies committed to investing time and money into products and devices that help to improve the lives of people with celiac disease. We feel strongly that the perfect should not be the enemy of the good. Devices like the Nima gluten sensor can be helpful for numerous people with celiac disease.  
    Disclosure: Nima is a paid advertiser on Celiac.com. Celiac.com's advertisers do not influence our editorial content. 
    Read Nima’s full report on test data at: Food Chemistry.com Read Gluten Free Watchdog’s Statement on the Nima device at: Glutenfreewatchdog.org Read Nima’s Reply to Gluten Free Watchdog at: Nimasensor.com

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