GFinDC

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.

The mystery effect upregulated genes in celiac patients will protect celiacs from the zombie virus!

On 8/23/2020 at 5:31 AM, Guest FDA stay the same said:

The FDA changed nothing. The rules from 2003 still apply. The FDA still acknowledges that there is no valid testing methods for such foods. It still demands that manufacturers adhere to the 2003 rules.  

Here is there statement, "The records need to provide adequate assurance that the food or ingredients used in the food are “gluten-free” before fermentation or hydrolysis. Once we identify that a scientifically valid method has been developed that can accurately detect and quantify gluten in fermented or hydrolyzed foods or ingredients, it would no longer be necessary for the manufacturer of foods bearing the “gluten-free” claim to make and keep these records."

"Likewise, the final rule requires manufacturers of foods that contain fermented or hydrolyzed ingredients and bear the “gluten-free” claim to make and keep records that demonstrate with adequate assurance that the fermented or hydrolyzed ingredients are “gluten-free” in compliance with the 2013 gluten-free food labeling final rule."

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"The rule requires manufacturers of these food products to make and keep records providing adequate assurance that: the food meets the definition of “gluten-free” before fermentation or hydrolysis; the manufacturer has adequately evaluated the potential for cross-contact with gluten during the manufacturing process; and if necessary, measures are in place to prevent the introduction of gluten into the food during the manufacturing process. The rule also discusses how FDA will verify compliance for distilled products. The definition of “gluten-free,” established in 2013, is not changed by this new final rule."

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Seems pretty clear.  The distillers have to keep records showing they used gluten free ingredients to make the spirits because there is no test to prove distilled spirits are gluten free.

I think that boron is a missing key to some people's health with regard to vitamin D.  There is a link between vitamin D and boron that is important.   It seems like boron affects levels of other nutrients in the body and how vitamin D is used by the body.  It could be that without adequate boron levels vitamin D cannot be efficiently used by the body.  Just one study  showing a link to mineral levels below.  If you are a rat, this is important information for you.  Rats on the same diet but lacking boron showed lower available levels of phosphorus and calcium.

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Effect of boron on vitamin D deficient rats

M Hegsted 1, M J Keenan, F Siver, P Wozniak 

Affiliations expand

PMID: 1713047

DOI: 10.1007/BF02990471

Abstract

The effects of different levels of dietary boron were determined in vitamin D deficient rats. Vitamin D deficient diets containing either 0.158 ppm or 2.72 ppm of boron were fed to rats for 11 w, and calcium, magnesium, and phosphorus apparent absorption and balance were measured in the twelfth week. Higher apparent absorption and balance values for calcium and phosphorus were observed in the rats with higher dietary boron, but very few differences were seen in body wt, organ wt, and bone parameters. Balance measurements represented the present status of the rats after 12 w on the diets, but other measurements represented an accumulation over the lifetime of the rat, including a suckling period with ample vitamin D and boron. The data demonstrated that when rats are vitamin D deficient, as indicated by hypocalcemia, the level of boron in the diet affects mineral balance.

There are some people who flunk the blood antibodies tests but still have celiac disease.  I think it's about 10% of tested people.  There are also people with DH (dermatitis herpetiformis) that are best tested by a skin biopsy, not the endoscopy.  DH is a skin condition that only people with celiac disease get.

There are many more people with gluten intolerance than people with celiac disease.  While they don't have testing for gluten intolerance, there is a theory that some cases of it are related to certain sugars.

About 30% of people in the USA have at least one of the major genes for celiac disease.  Not all 30% will develop celiac though.  Although any person with the gene or genes could develop celiac at any time of life.  The celiac genes are also associated with other AI (auto-immune) conditions.  So people with AI conditions in their family may have the celiac genes.

It seems to me they found gluten transfer occurred in almost 100 percent of tests.  Maybe not at 20 PPM in all cases but at some lower level.  So the study does show gluten transfer /contamination is possible and does happen with poor kitchen hygiene.

On 12/5/2019 at 6:49 AM, Guest Helen Ross said:

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Hi Helen,

The article talks about celiac antibodies attacking proteins in nerve cells.  That is not related to different foods causing a celiac like reaction (cross-reactivity).

I have additional food intolerances besides wheat. rye and barley myself.  But those foods cause different symptoms than my celiac reaction does.  And those reactions don't last as long as my celiac reaction either.  So it seems to me they are not a so called cross-reaction but are a different food reaction.  That's just my take on it though, I am not a doctor.  It seems to me there is room for lots of learning on the subject.  But maybe not much interest in it for medical researchers.

Another thing to try for adrenal fatigue is selenium.

From the Omission web site:

GOVERNMENT DISCLAIMER

Beer fermented from barley, a grain containing gluten, and crafted to remove gluten. The gluten content of this beer cannot be verified, and this beer may contain gluten.

On 10/31/2019 at 1:22 PM, Scott Adams said:

Open Original Shared Link here definitely has issues. Clearly when "two active-celiac disease patient samples gave responses to the rice flour extract" that was used as a control, you cannot then claim in the same study that the 3 out of 31 celiacs who reacted to gluten-removed beer is statistically more significant than the two who reacted to the rice flour, can you? Clearly there is an issue with how the study was set up and run.

• "Three active celiac disease patients showed a response to barley and the gluten-removed beer, and again, none of the non-celiac control subjects showed this reaction pattern"

If we can conclude after 90% of celiacs in the study DID NOT have a measurable reaction to gluten-removed beers, but because 3 might have (we really don't know what else these subjects were eating during this study, because it doesn't really talk about this) that gluten-removed beers are not safe, then can't we also conclude that rice flour is unsafe for celiacs, because "two active-celiac disease patient samples gave responses to the rice flour extract"?

Since the rice flour control used in this study produced similar antibody reactions as the gluten-removed beer (7% vs 10%), I don't think you can conclude anything from this study other than the subjects were not all eating a gluten-free diet while participating in the study, because rice is definitely gluten-free.

I think there is a bit of confusion about the study.  What they did is use blood from celiac disease patients who were all eating gluten at the time.  These are not blood samples from people who were on the gluten-free diet.  They then used those active celiac disease blood samples to test for antibody reactions to things like barley flour, gluten-free beer and gluten removed beers and rice flour.  The barley flour reaction was used to identify strong reactors to barley gluten.  A few people's blood had antibody reactions to rice flour also.  That doesn't  mean their blood reacting to barley fragments isn't important.  The study is trying to find a way of testing celiac disease patients antibody reaction to barley fragments  since the R5 ELISA test is not good at doing that detection.  The study showed that some celiac disease patients blood antibodies do react to gluten removed beers with an antibody response.  Not all of the celiac disease patients blood samples reacted, but some did.  So the conclusion should be that gluten removed beers are unsafe for some celiac disease people.  Some might be fine with it, but others are not.

On 11/1/2019 at 11:33 AM, Scott Adams said:

I’ve never gotten sick from it, and have been drinking it for years.

Well, we all know you are a sick puppy Scott!   Are you sure it doesn't affect you?  I wonder if you tried stopping it for a couple months if you'd feel different/better.  Sometimes we don't notice changes if they happen slowly.  Like in slight contamination over a period of time.  Just a thot.

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Omission beer makes me sick.  I tried it several times and it was not a good result.

5 hours ago, Guest Wayne@gojade.org said:

I wrote one of the previous messages about my husband and family having celiac and confirmation by 23&me test. I would also like to add, that many DR's are still under the impression that taking the blood test is the only way to get accurate results, this may be true, but one has to be eating gluten for months before the test. We all went gluten-free right away and saw results. We know it is celiac because every time one of us gets into gluten we get sick and/or rashes. Yet, we are constantly told in order for a DR to prove we have celiac we have to do the blood test and put ourselves through excruciating pain, not worth it!

Yes, the celiac testing process is 12 weeks of eating gluten before the blood antibodies are drawn, or 2 to 4 weeks before the endoscopy is done.  It's definitely better to do all the celiac disease testing before going gluten-free.  Gene testing is interesting but it doesn't prove a person has celiac disease.  Around 30% of people have the celiac gene/(s) but only 1 to 3 % develop celiac.

Our bodies are often pretty good at letting us know if gluten is a problem though.

7 hours ago, Guest Lee said:

This would be great...I was diagnosed in 2009 the same year I met the Love of my life and would love to take her out to eat and enjoy an evening out . She is a Trooper no doubt as we eat at home and she goes out to eat with friends and family but I stay back for the fact I'm scared to feel like hell for 2 or 3 days after being exposed to gluten and it seems no matter how hard I stress my sensitivity to restuarant waiters and waitresses I am always on the losing end . Just once would be great to wine n dine with her like normal couples get to enjoy . Keep up the research and thanks for the hope ????Finland sounds great 

Hi,

Maybe try the Find Me gluten-free app for phones.  It can show you restaurants the people have been successful eating at.

1 hour ago, Guest DeLene said:

I was diagnosed with celiac disease when I was about two years old (1939). Mother described large abdomen, skinny legs, failure to thrive. Lived on bananas and buttermilk for two years. I've  had exzema for as long as I remember,  later diagnosed mctd or uctd, lupus, uveitis, Sjogren's, pah, Parkinson's/not Parkinson's, paravertebral myopia, cardiac issues, and more. A rheumatologist did a test (no biopsy) and told me I do not have Celiac disease.  Recent bouts with GI problems, weakness and fatigue convinced me to try a gluten free diet. If I feel better after a month I will have found an answer and a treatment.

The celiac antibody testing requires 12 weeks of eating gluten before the testing.  It takes only 3 to 4 weeks of eating gluten for the endoscopy testing.  Celiac disease does not go away, so if you had it as a child you have it now.  Congrats on going gluten-free again, I hope you feel better soon.

Every celiac should react to rye.  It is one of the 3 common triggers for a celiac reaction.  Oats are a known trigger for a subset of the celiac population.  Wheat, rye, and barley are the celiac primary reaction triggers.

• Amaranth
• Buckwheat
• Chocolate
• Coffee
• Corn
• Dairy, i.e. milk and cheese (alpha-casein, beta-casein, casomorphin, butyrophilin, whey protein)
• Egg
• Hemp
• Millet
• Oats
• Potato
• Rye
• Rice
• Sesame
• Sorghum
• Soy
• Tapioca
• Teff
• Yeast

1 hour ago, Guest Gluten Free and Healthy! said:

I bought, at an estate sale of deceased 'dooms-day preppers', a large can of wheat in seed form, packaged in 1940, never opened, and, supposedly, still capable of either sprouting and/or making flour. 

 

What are/were the gluten levels in wheat from the 1940's, and if you don't know, where could I go to find out?  After 11 years of being gluten-free, I'm desperate for real biscuits...

If it is more than 20 PPM it is too much.

The article does say to diagnose and treat celiac disease.

Quote / "The excitement arrises because a team of scientists has developed a selective, non-invasive breath test that could be used to diagnose and treat celiac disease and Type-II diabetes."  // Unquote

I assume they mean to diagnose and monitor celiac disease though.

2 hours ago, Guest fubu said:

Since the day I was born I've been dealing with stomach issues, bloating/pain/all the Celiac symptoms...I went through a lot of stress after a car accident entire system crashed.  For 2 years my body swelled - couldn't' sleep or eat, super constipated, family doctor send me to a psychiatrist than a Gastroentologist whom diagnosed me with "IBS" by tapping on my tummy.  He didn't investigate into the Stomach-Gut problems, No Blood work, No ultrasound, nothing!!  Friend referred me to a Nutrionist/ND, after testing I have Anemia, Vitamin B deficiency, Thyroid problems; she suggested I try gluten-free diet for 3 months to begin and the swelling + health problems began clearing up.  My family doctor ordered me to Stop seeing a ND b/c she doesn't believe in Natural Medicine, here I am.

It's impossible to find any doctor in Alberta or a Good Doctor who has time to listen and find out the problem; it's a 5 min In & Out Appt.  It makes me wonder why people choose to become a doctor to not care for a patient's need?? 

Welcome to the forum fubu!

Your story of poor diagnosis is unfortunately not unusual.  Most people with celiac disease are still undiagnosed today.  Partly because many doctors don't think to check for celiac.   Celiac and the gluten-free diet is more accepted in the non-traditional medicine field.  But it would have been better for your ND to have you tested for celiac before going on the gluten-free diet.  Now that you are gluten-free the celiac testing will not be accurate since your immune system response to gluten is declining.

The important things is you are feeling better.  Many of the forum members have not got a formal celiac diagnosis for similar reasons.  Even some main stream traditional doctors will suggest people try the gluten-free diet without testing them first.  Ignorance about celiac disease is in abundance in the medical field.

34 minutes ago, Guest mom of son that hurts said:

You may never consider a vaccine but from someone that has a son so sensitive that he can't walk due to joint pain several times a week, a vaccine would be wonderful.  He can be in a room with people that aren't even eating food but have it on their hands etc.  He shakes no ones hand, he eats no food he doesn't prepare, he tries not to touch surfaces and still has terrible issues.  A vaccine would be awesome so he could have his life back.  I am glad yours isn't so bad that you would want one but don't discount those that need it.

Hi, He may have additional food intolerances that have developed and are causing symptoms.  Nightshades and soy are 2 that seem to be associated with joint pain.  Also vitamin D deficiency can cause it.

4 hours ago, Guest Amber Kay said:

This is what happened to me. I went years and years with depression, chronic pain in my lower stomach (constant PMS 24/7 for almost 6 years), my stomach was awfully bloated, too. And (sorry, tmi coming) I was only going to the bathroom (number 2) once or twice a month and it was so bad, I bled, even when I was eating over 150 grams of fiber A DAY. Drinking at least a half a gallon of water A DAY. No bowel movements (and took a bottle of castor oil to get the job done and that was a nightmare, too). I then started developing eczema, two years after that, hives. I started looking into the hives, because I could only take so much with the eczema flairs and now these little itchy bastards covering my chest, arms and neck. So, after hours on the laptop looking up why I have hives and eczema, then why I was so bloated, every single site I looked at had ONE thing in common in the list of things that could cause ALL of my symptoms. Yep, you guessed it, wheat. I went to my doc, told her what I felt was happening (after my research) and guess what? two, almost 3 months gluten free and not only am I without hives, my eczema is NOWHERE near as bad as it was, I have lost 20 pounds and 7 inches in my stomach (from being constipated and extremely bloated). I feel so much better. Less anxiety, clearer head, regular bowel movements. The hard water in my shower irritates my skin, but that's it. I am so happy I discovered my gluten allergy, just sorry it took so dang long.

Hi Amber Kay,

Your itchy hives could be DH (dermatitis herpetiformis).  You can read up on DH in the DH section of the forum.  You will find tips for how to deal with it there that might help you.  https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

Here's another take on oxalates.  Some interesting points in it.

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Sounds interesting.   Nice that it may reduce the immune reaction.  Too bad they include dairy in the pills.  Knocks it out for a lot of people who can't do dairy.

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