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I find this kind of information useful and interesting.  As an infant I could not tolerate cow's milk at all, and eventually I did better (but not great) on goat's milk.  But I always had trouble with dairy and I never wanted to drink milk, eat ice cream, cheese, etc.  I just knew to stay away from it.  My mother wasn't diagnosed with celiac until I was about 16, but interestingly, she had absolutely zero issues with dairy.  Even after she got her celiac diagnosis, I still thought I wasn't affected by gluten and figured my problem was dairy.  Wrong!  It was both!  When I did Enterolab testing for celiac/gluten, I also got a test for dairy sensitivity (specifically, casein intolerance).  I was positive for both, and Enterolab claimed casein intolerance could do just as much damage potentially as gluten. They strongly advised avoiding all dairy as well as gluten.  I've tried the lactose pills, but I'm pretty sure that lactose intolerance isn't my problem...it's casein.

6 hours ago, Bluebird47 said:

I had no idea that there was a “rift” between people diagnosed with celiac and those with gluten sensitivity.  I was just diagnosed with gluten sensitivity after an endoscopy, multiple digestive tract biopsies, and blood work.  All I know is that if I eat anything with gluten in it, my gums and mouth itch - and if I don’t stop immediately, I get the searing pain throughout my digestive tract that prompted me to get tested in the first place.  My mom is verified celiac, so I was told that I will eventually develop that.  But I am gluten-free right now, because I just can’t eat the stuff.  So why is there a division between celiacs and gluten-sensitives?  We’re all suffering.  Let’s just support each other.  I can’t tell you how much I miss beer and a good cheeseburger . . .

Gosh no, I don't see any sort of "rift".  I've come to view gluten sensitivity as a very broad spectrum of reactivity to gluten.  Gluten sensitivity is the big umbrella, so to speak.  Spread across this wide spectrum are a multitude of possible reactions to gluten.  One particular reaction on this spectrum is designated as celiac disease, which is specifically when gluten attacks the lining of your intestines, and can eventually lead to villous atrophy and leaky gut.  This type of damage is specific to celiac disease and won't occur in other parts of the non-celiac gluten sensitivity spectrum.   Celiac disease is believed to only be possible if you have one of the two identified celiac genes...DQ2 or DQ8.  If you don't have one of those genes, you most likely don't have celiac disease.  But this doesn't mean you don't have gluten sensitivity.  So celiac disease is a specific type of gluten sensitivity, basically.

If you don't have celiac disease  but yet you have any of a wide variety of symptoms that can overlap with those of celiac disease (minus the villous atrophy part), then you more than likely have gluten sensitivity.  There are quite a few identified genes that are referred to as "gluten sensitivity pattern" genes.  Gluten could make you every bit as sick in so many different ways just as you would be with celiac disease (again, any number of reactions can occur except you wouldn't get the villous atrophy that occurs when you have the celiac gene).  There are over 200 different manifestations of effects of gluten sensitivity, most of which can be found in either celiac disease or in non-celiac gluten sensitivity.  

Apparently not all gluten sensitivity related genes are as yet identified, and gluten sensitivity as a serious syndrome has not been studied all that intensively yet and not nearly enough is known about it.  Unlike celiac disease, there is not a blood test to identify non-celiac gluten sensitivity.  To further complicate things, it is sometimes difficult to get a positive celiac blood panel even though you are very sick and have the celiac gene and very well might have celiac disease.  There are several reasons for this kind of situation.  So diagnosis is often elusive, which is why they say it can take up to 11 years to be diagnosed properly!  Many doctors know only sketchy and vague information about celiac disease and its symptoms, and they can be even more clueless about gluten sensitivity.  For example....a doctor might test for celiac disease via the celiac blood panel, and the test comes out negative.  The doctor concludes you don't have celiac disease and you can eat gluten, and your symptoms must be from something else.  At this juncture they may not suspect gluten sensitivity precisely due to the lack of information on it.  

However, it is very well possible that whether you have celiac disease or gluten sensitivity, the solution is the same:   your symptoms would be eliminated with the exact same protocol as with celiac disease:  eliminate all gluten from your diet.  Forever.

NOTE:  I just realized the above posted comments related to a 2016 article ABOVE the comments (duh!), and now having read the article, I agree with its contents.  I do think that when you have symptoms which strongly suggest celiac disease (and/or gluten sensitivity) and you can't get a positive celiac blood test to confirm it (more common than people realize), it's a useful thing to get a gene test, which could at least rule out celiac disease and villous atrophy.  Apparently not everyone would agree a gene test is worth it, but I found it extremely useful as I've never had a positive blood panel.  The gene test gave me a better reason I should perhaps be on a gluten free diet.  But ultimately....the success of the gluten free diet is the ultimate arbiter of what is what.  If you get better gluten free, you have an answer and at least to me, I no longer feel driven to get a definite diagnosis of celiac disease....I now know that I have the DQ2 gene plus a gluten sensitivity pattern gene, and either way, if I don't want to be sick and don't want to get sicker, I must not eat gluten.  Simple as that.

Ricky, good job on the dietary approach.....even with a solid celiac diagnosis your current diet would be the solution anyway.  Whether you have actual celiac disease or whether it's gluten sensitivity without celiac, diet is the solution and the "cure", so to speak.  As you have found, gluten isn't usually the only problem and it becomes a matter of tracking down all the food offenders to get truly better.  The diet is sometimes a nuisance, for sure, but it's a gazillion times better than feeling terrible, being sick, having GERD etc. and having to constantly swallow medicines that may hurt you in other ways. 

The genetic test will be informative in the sense that it will reveal if you have a celiac gene as well as gluten sensitivity pattern genes, and that will be a confirmation that you at least have a predisposition to these gluten problems.  I'm 71 myself, and it has taken the last 3 months on a not only gluten free, but also a grain free (all grains!), dairy free, and sugar free diet as well as avoiding certain vegetables that I know are problematic.  I've felt increasingly better over 3 months, but have realized only the last week or two that I feel really really GOOD finally.  I will never go back to my previous way of eating, and at this point, I'm very content to eat this way despite the restrictions.  Feeling good is so much more important than  eating foods that make me increasingly sick.  I like that Hippocrates quote:  “Let food be thy medicine and medicine be thy food”.  In our case, the medicine is the RIGHT foods.

On 4/6/2021 at 10:58 AM, Oldturdle said:

As an "old celiac," diagnosed at age 69, and basically asymptomatic, I can not imagine not being given the option of education about, and treatment with, the gluten free diet.  My grandmother died in 1949 of "wasting."  She was younger than I am now, and in hindsight, she probably had celiacs.

My grandmother died at 99.  I don't know if she ever had active celiac disease, but I do know she had a celiac gene because my mother ended up with two copies, and therefore, one had to have come from her mother.  My grandmother had very bad arthritis by the time she was in her 80's.  I will never know if that was connected to celiac disease, and I don't know if she had other symptoms she wouldn't have talked about, and obviously, the connections to all these other conditions were totally unknown in the 1980's and 90's.   (She died in 1994).  I can only speculate, but I'll bet she had other things going on as well.  My mother, on the other hand, having two celiac genes, got suddenly very sick from celiac when she was about 46.  She had the classically known symptoms (at that time) of the whole digestive/villous atrophy/highly sensitive type symptoms.  Even with cross contamination she would be violently ill.  Her active celiac disease was apparently triggered (since she had the gene/s) after surgery.

Sadly, getting diagnosed with celiac disease and going gluten free doesn't always solve all the problems.  I would make a guess that you likely regularly eat one or more other foods (or perhaps many foods) that are keeping inflammation active even in the absence of gluten.  Dairy is often a co-offender that goes along with gluten sensitivity, so you might take a look at that possibility (you could also have casein sensitivity) and spend at least a month or more without any dairy at all.  Another problem food is corn.  I recently read a book that suggested one should eliminate every single grain as they all contain potentially problematic proteins.  I have gone on such a diet...I'm about two weeks in right now, and I've eliminated all grains including corn, all dairy, almost all sugar, beans (lectins) and nightshade vegetables.  I'm starting to feel a lot better day by day, so I think there might be something to this theory.  Later, I will re-introduce various foods one by one to check on reactions.  In the beginning, elimination diets are very useful.

GM doesn't give the "shared equipment" or "made in a facility that processes wheat etc." statements, oddly.  However, I'm assuming that if they actually put the official gluten-free statement out there, they are held to a certain standard of making sure that is the case.  It's odd that they make some of their cereals gluten-free, but not other, very popular ones such as Trix.