trents

My heart goes out to you. We always suffer with our children when they suffer.

As CL asked, has your son been diligent to avoid gluten or do you know? Having worked in a hospital setting for many years before retiring, I can tell you it is not uncommon for young type I diabetics to be in denial about their need to manage their diabetes and to have one diabetic crisis after another. By the time they get it through their heads that they need to take this seriously there is often significant deterioration of the vascular and neurological systems already. Then you throw in Celiac Disease and the need to be careful of one more thing and it's just overwhelming. There is the great temptation to say, "What the heck! I'm just going to live my life for as long as I can" and to throw caution to the wind. Celiac disease can cause nerve damage as well and fatigue is very common with the celiac disease package of symptoms as is weight loss. Because of the damage that celiac disease causes to the lining of the small bowel, nutrient deficiencies typically accrue that create any number of health issues. 

This is certainly an item or our prayers.

Good questions. I got the impression that the study's sample population was representative of those who were still eating out at times and eating main stream foods at home while trying to be gluten food detectives, i.e., asking questions about ingredients and preparation when eating out and reading the labels of mainstream prepared food products. In other words, people who had not completely eliminated mainstream eating and food products from their diets but who, nonetheless, were being as diligent as reasonably possible under the circumstances.

In my own experience I can relate to this. The first ten years after my celiac disease diagnosis were spent while still in my working years where eating connected with department retreats, corporate meetings and company cafeteria dining was unavoidable. It was not always possible to pack my own lunch so I did the best I could to check with chefs, comb through menus and allergen lists, etc. Only a couple of times, being largely an asymptomatic Celiac, was I aware of being glutened. However, I did not experience villi healing until after retirement when I was consistently eating home cooking where I had more complete control.

Latest research continues to confirm how even the diligent get glutened more than they realize: https://www.beyondceliac.org/research-news/new-evidence-gluten-in-gluten-free-diet/?utm_campaign=Research Opt-In&utm_source=hs_email&utm_medium=email&utm_content=87884192&_hsenc=p2ANqtz-_vCatKrAPHUZPbqONwt1ZO29SQYGDfoC4oRzekRSVh1aYs1-v6ZMKP_20dPmQLRBJooPYqZzYD_JCoUVgaO1wwLsuGkw&_hsmi=87884192

To me as one who is largely asymptomatic except in cases where I accidentally ingest a large quantity of gluten (as when I mistook my wife's wheat flour biscuits for my gluten free ones) this paragraph from the above article needs highlighting:

"However, study participants with no symptoms had a significantly higher proportion of evidence of gluten in their urine compared to symptomatic participants. Urine tests measured gluten at the end of the weekend, leading researchers to suggest that patients who don’t have symptoms likely relax their vigilance in the gluten-free diets on the weekends. Also, when patients don’t have symptoms, they lack warning signs that would “prompt them to correct the diet,” the study says."

Again, your reaction could be to some other ingredient besides gluten that is contained in this particular Doritos product that is not found in the other non certified non gluten containing Dorito products. 

A good sign that they they aren't (yet, anyway) treating you dismissively. 

Certainly, avitaminosis can and often does develop from celiac disease because of the villi damage and resultant nutrient malabsorption. Bloodwork as a standalone diagnostic procedure for avitaminosis can lead to under-diagnosis of some vitamin deficiencies. An example is B12 deficiency which can be masked by folic acid supplements.

And vitamins and minerals can be present in adequate quantities in serum analysis but still not being utilized properly by the cells for some reason. Clinicians usually also look at symptoms and life style issues when diagnosing vitamin deficiencies. A classic example is found in osteoporosis. Blood work often shows that serum calcium levels are normal because the body is removing the calcium from the bones and putting into the blood. And dietary calcium supplementation has not been proven to really fix this.

And of course, the biochemical interaction of vitamins and minerals is complex. They are codependent on one another. This is especially true of the B vitamins. So, it can be difficult to pinpoint which one is lacking.

I'm not a doctor or medical researcher but I don't see how there could be a connection between the two. 

"Polycythemia vera occurs when a mutation in a gene causes a problem with blood cell production. Normally, your body regulates the number of each of the three types of blood cells you have — red blood cells, white blood cells and platelets. But in polycythemia vera, your bone marrow makes too many of some of these blood cells.The cause of the gene mutation in polycythemia vera is unknown, but it's generally not inherited from your parents." https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850

People with celiac disease have a genetic predisposition to develop celiac disease. There is no evidence that I know of that suggests this disposition is a mutation. Besides, to be linked to polycythemeia VRA there would have to be overlap in the genes that cause each disease, which is possible, I suppose.

So what you are really asking is does anyone know of research that shows celiac disease may be triggered by polycythemia VRA. Correct?

Related, as in cause and effect or just statistically?

24 minutes ago, cyclinglady said:

 

Consider getting your antibodies checked for connective tissue disorders if this does not resolve in a few months.    Something else can be brewing.   My last gluten exposure caused a variety of issues.  Some would not resolve.  Almost a year later, A repeat endoscopy revealed a healed small intestine but found autoimmune Gastritis.  I learned that not everything is due to celiac disease.  

I'm glad you said that CL. That's one of my frustrations since participating on this forum. People with celiac disease forget that things go wrong with their body that are not related to celiac disease. We can get medically myopic. 

24 minutes ago, cyclinglady said:

 

Yes, and some doctors deny it is a real disease entity. But more and more are recognizing it as a medical reality. By definition, a syndrome is a collection of symptoms that is difficult to find an underlying cause for. Those of us with celiac disease understand that many medical problems have an autoimmune base. And the list is growing.

Has anyone checked you out for CPS (Chronic Pain Syndrome)?

So you are now 75 yr. old? This is assuming your efforts to eat gluten free started with celiac disease diagnosis. Are you male or female? Sorry to have  to ask but "Chris" can be used for either and the causes and patterns of hair loss can be different for men and women.

Getting back on topic here, do labeling laws in the U.S. require that "naturally gluten free" foods contain warnings when they are being processed on equipment that may also be used for processing foods that contain gluten bearing grains? Seems to me that I commonly read that warning on things like confections that are processed on equipment also used for processing wheat, barley and rye. I just have always assumed dried fruit and many other non grain food crops would be taking an entirely different transport and processing route as these other foods where we are warned about the possibility of gluten cross contamination. But I certainly could be wrong.

I am also aware that Celiacs who work in grain storage areas, flour mills and bakeries can experience gluten ingestion from breathing the air in these settings because the grain dust winds up in the airway mucous lining and gets swallowed. This is what I was referring to in my earlier reply to AuntieE about the possible danger of getting glutened from breathing the air in breadbasket farming areas where from pollen and harvesting activities there might be a high enough concentration in the air to create a problem for some Celiacs. But I think I was misunderstood.

Okay everyone, let's take a step back here. The posting is getting adversarial. We may not agree with other's opinions but we still need to treat each other with respect.

1 hour ago, AuntieE said:

Eggs are scarce, meat too expensive now, canned fish is in very low supply, veg is not plentiful. I'm having to ration and am dropping weight. I can eat pascha chocolate, or could if there was any on shelves. Ditto wholesome brand sugar. I could eat dried fruit if ppm was better controlled but thanks to all of you that don't mind no controls over gluten free food and allergens, I can't even eat that. 

So you're saying a bag of raisins may have gluten contamination? Never thought about that and I've never heard of that being brought up in gluten-free circles. For that matter, I guess the air we breathe could have gluten in it, especially if you lived in a wheat producing farm area.

So AuntieE, I'm assuming this gluten free product scarcity is not affecting you much since you don't use processed foods that are labeled gluten-free anyway. 

1 hour ago, mbrookes said:

As for produce, we are very lucky in that crops are beginning to come in for the truck farmers. I am in central Mississippi. We have a local farmers. market which usually in not crowded and everyone seems very conscious of social distancing. Yesterday I got sweet corn, green beans, egg plant, strawberries, onions, potatoes and sweet potatoes. All very fairly priced. Tomatoes should be ready soon. So I won't make y'all too jealous, prepared gluten-free food are totally scarce. Our Whole Foods has one small freezer with a few loaves of bread and a few cakes. Crackers are like hen's teeth.

That's incredible! Where I live we can't even put any warm weather garden plants outside until the middle of May. Ripe Tomatoes aren't available until early August. Sweet corn maybe early September. I am envious.

Haven't noticed the milk prices changing much where we live in SW Washington State and we even have a local Dairygold plant. There is a lot of milk produced locally here so prices may be tied to nearness to suppliers.

Does it only hurt when you swallow? Do you have pain at other times or when you lie down to sleep? Was the doctor who did the scoping a gastro doc or a GP?

It must cost the food companies a lot to add the words, "Gluten Free" to the labels of naturally gluten free products so that they have to charge more to cover it (said tongue n' cheek).

And then there is the other extreme in gluten free labeling where you are seeing it tagged to food groups that would be naturally gluten free anyway like milk and OJ. Of course, that is marketing for you.

Well, this may turn out to be an involuntary weight loss program for some.

Bob's Red Mill out of Portland, OR area has been and continues to be out of all types of hot breakfast cereals and prepackaged baking mix products. Anything you could sink your teeth into is gone.

Sometime ago my wife bought a 2 lb. can of powered whole eggs for like $20. It's now selling on Amazon for like $97.

Unfortunately, "gluten-free" doesn't cover all the bases for those with celiac disease and other gluten-related reactions but who suffer insensitivity to other ingredients which are common to processed foods. But still, I'm very grateful that the food industry has now given us so many gluten free offerings with flavor and texture qualities that approximate their gluten containing counterparts.