trents

You mention not including much red meat in your diet. I wonder if your body is craving some of the nutrients red meat is rich in such as iron, B vitamins and protein. Make sure you are taking a quality gluten-free multivitamin (I use the Costco "Kirkland" brand) and are getting a good amount of protein and fat in your diet from other sources. Yes, "fat". Fat satisfies and helps give staying power against hunger. Doesn't sound like you are a vegetarian or a vegan so look at adding more eggs and cheese for instance to get more B's, protein and fat. Nuts and seeds are also high in fat and have a lot of healthy qualities. I think you are sabotaging yourself by increasing your intake of gluten-free grains as more carbs like that will cause higher fluctuations of blood sugar. We get hungry when our blood sugar drops. Carbs cause it to spike and then plummet. I would suggest eating less carbs and more fat.

The gallbladder's purpose is to produce bile that helps digest fat. People with gallbladder duct blockage from stones often find that attacks are brought on when eating high fat meals. When ingesting a lot of fat the gallbladder goes into overdrive trying to pump out bile that is being blocked by stones in the duct. This causes the  gallbladder to cramp up and give you pain.

I find it odd that your gallbladder pain was connected with eating bread, which is not normally high in fat (unless, of course you slather it with butter).  Abdominal discomfort when eating bread would point more to Celiac Disease in my mind.

Here's another related question for the community.

Have any of you ever had chelation therapy to bind and remove heavy metals from your system? What do you think of this option?

The issue is two-fold. First, rice naturally has a much higher arsenic uptake than other common grains. Second, this natural biochemical tendency of rice is exacerbated when it is grown in areas where the soil has a high arsenic content. So, as cyclinglady said, try to control #2 in that equation. If you use a lot of gluten-free riced-based prepared food products research where they come from. Ennis' suggestion about totally changing the nature of your eating habits with regards to starches is also valid and not just for the arsenic issue.

The other thing you can look into is finding a physician who specializes in heavy metal chelation therapy. I'm not sure I buy whole hog into chelation therapy (for anything and everything I mean) but in this case it might be worth looking into.

Cycling lady said everything I was going to say so, "ditto". I'm particularly curious about how you were diagnosed. You may actually have something else going on in your body besides or in addition to celiac disease.

I would only add that several recent studies are showing that cross contamination is much more of a factor in keeping Celiac disease "smoldering" than we had realized. Food products labeled "gluten free" are often not actually meeting up to the standard and the problem is even worse when dining out. Restaurants offering gluten free menu choices commonly do not consistently practice food handling techniques that will ensure the prevention of cross contamination. 

Ditto to what kareng said. And there is no evidence that I know of that other grains cause the same villi damaging auto immune reaction that the gluten of wheat, barley and rye produce in celiacs. There is still some controversy surrounding oats, however.

I certainly would have your gallbladder checked out if you have not. Most people don't realize that gall stones are not the only problem you can have with your gall bladder. The gallbladder can also just quit producing bile (or sufficient quantities of it) which would, like stones blocking the duct, result in problems with digesting fats. But there wouldn't be the acute pain that you would experience with stones blocking the duct.

So it looks like the study is in the formative stages of trial and there are no results to report yet. Am I missing something?

Hard to get excited about this until we see some testing results. There have been a number of Celiac oral prophylactics tested over the past several years that seemed promising but turned out to not be the ticket we were looking for. Orally administered solutions seem to have too many variables to make them reliable. One of the issues is timing. You have to take them at the right time before incidental exposure to gluten so that the antidote mixes properly with the food in the gut. Another is dosage amount relative to the amount of gluten to be encountered. And how do you predict that? If? When? How much? 

A more promising approach IMO is subcutaneous injections because they are more systemic in nature and therefore likely to more consistent. It would be like allergy shots or insulin injections that can be self-administered. Last week I posted links to one such study in the late stages of testing that looks very promising.

With any of these medication solutions however, there will be the question of cost and insurance coverage. 

Abolutely! All the issues you described have been tied to Celiac disease. Have you been diagnosed with Celiac disease yet? And if so, are you being conscientious in avoiding gluten?

If you have not been diagnosed you need to have testing done.  But make sure you have not gone off gluten until after the testing or the testing will not be accurate.

"One of the reasons I push a Paleo, Keto, or Atkins diet at people recovering to hit as many birds as possible in one go."

Agreed!

Good read and very thought provoking. Something a lot of people who thought they were gluten intolerant but have been tested and found not to have the villi damage characteristic of celiac disease need to explore.

But it needs to be emphasized this is only applicable to those experiencing digestive problems when consuming wheat, barley and rye who are not really celiacs. The article does make the distinction between celiac disease and gluten sensitivity but this one sentence concerns me: 

Those with a wheat allergy, Open Original Shared Link (about 1% of the population) and certain other autoimmune conditions get very sick if they eat it.

Depending on how you interpret the comma in that sentence it could be misunderstood to communicate the celiac disease is a food allergy.

My concern here is this finding will be misinterpreted by the media and the public who still confuse Celiac disease with food allergies and intolerances. 

Fact is, very few celiacs who are making an honest effort to eat gluten-free are actually managing to do so.

Open Original Shared Link

This study's findings are in line with other studies I have seen lately dealing with the same issue.

The result is that there is some improvement because we are getting less gluten but it doesn't just go away like we had hoped.

You really do need to get tested. The earlier you catch it the less likely serious and permanent damage to your body will occur. One of the Celiac associated medical problems is osteopenia/osteoporosis because of poor mineral absorption. 

First, celiac disease itself is an immune disorder. Specifically, it is and "autoimmune" disorder. So it represents a dysfunction in your immune system to begin with. If you are talking about infectious diseases, the connection may have more to do with poor nutrient uptake due to damage to the small bowel mucosa (villi), which is where most nutrient absorption occurs. 

Being a new member may we also assume you are a recently diagnosed Celiac? How educated are you on where gluten is found in food and also about cross contamination issues? Many new Celiacs are still getting much more gluten than they realize because they just aren't yet very savvy about recognizing how and how often we get glutenned unless one is well-educated and extremely vigilant. Even trace amounts of gluten can prevent healing in the small bowel,  though symptoms may seem to largely reside.

Not everyone is in a situation to "cook like ma Inglalls". That in itself has to be socially limiting, even if you only take into consideration the time involved. I think what we're looking at here is those many times most of us don't have the total control we would like over what we eat as when we go to a restaurant or eat at someone else's home.

https://www.beyondceliac.org/research-news/View-Research-News/1394/postid--110185/?utm_campaign=Research Opt-In&utm_source=hs_email&utm_medium=email&utm_content=63728458&_hsenc=p2ANqtz-94UI2Bnq5AyVwicTvM9xl-okSsFjDZKboiy6yL3oVT1kKe0-kxMX9i7HwZUWgM66kodg0tM-Nymv9vFIDcEw_S_K0iyQ&_hsmi=63728458

Edit: Note, this is not a pill but a subcu injectable medication. It would be like giving yourself an allergy shot or insulin. So it would seem to avoid some of the problems that Celiac pill meds have presented such as timing and less than complete integration with the gluten in the ingested food. The injection would give a more systemic effect.

Whatever really works, doesn't have side effects that are worse than the disease it is addressing and is affordable is fine with me, Ennis.

CL, I think you miss the point the referenced article was trying to make and that I was expressing agreement with. In fact, in your response you actually reinforce the point the article was making. The article was not (nor was I) saying that celiac disease cannot be successfully controlled by scrupulous avoidance of cross contamination. What it was saying is that it is virtually impossible to do so without becoming so consumed with the effort that quality of life suffers significantly. In my own words, to totally eliminate cross contamination one must become essentially OCD about gluten.

Having said that, with the current state of medical knowledge and treatment about celiac disease, such hyper vigilance may be appropriate for those who suffer severe reactions from exposure to traces of gluten. But wouldn't it be better to have a safe medication available to make that unnecessary?

This is truth: https://www.beyondceliac.org/community/newsletter/?utm_campaign=Newsletter&utm_source=hs_email&utm_medium=email&utm_content=63591229&_hsenc=p2ANqtz-8LamDIJvpuutXMJO2cvHeKlmhe9MWb8EOS02Ah24ZTk60vhYXJtVFQlXSshFz9beMtWnmnrjILUMQLlS9Z0NIydUdqsQ&_hsmi=63591229

We have been beating our heads against a wall for years. We not only need to be conscientious about avoiding gluten as best we can but we also need a medical agent that will take care of cross contamination. Totally avoiding gluten is a pipe dream.

I was thinking refractory as well and it's turning out to not be so rare as was previously assumed.

You might also look at a experimenting with a ketogenic diet which would essentially eliminate starches and most of the sugar in your diet. If you are suffering candida (yeast) overgrowth it likely would really help with that. But with no eggs in your diet going keto would be a challenge.

Gary,

You say you were Dx with Celiac Disease 20 years ago. Are you being compliant with the celiac disease gluten free diet? You did not mention that.

I was diagnosed with celiac disease about 15 years ago. One of my blood abnormalties was low iron levels. I started taking an iron supplement and still do. My iron levels are now normal. The supplement I use is Ferrous Sulfate with 60 mg of elemental iron and I take it daily. Yes, vitamin C taken with an iron supplement does improve the absorption. Iron supplementation can be irritating to the stomach and so some people don't tolerate it well. There are buffered or "chelated" forms of iron supplements that cause the release of the iron to be slowed down. This can really help reduce stomach irritation.

As others have said, many medical conditions that can cause anemia. One of them is "pernicious" anemia in which your body doesn't produce something called "intrinsic factor", something that is necessary for the absorption of B12 into the body. It's kind of an enzyme I think. Lack of B12 and also lack of folic acid in the diet or poor uptake of them can cause iron deficiency.

If you take an iron supplement you should have follow up lab work done after a time to make sure blood iron levels don't get too high as iron overload can damage organs.

The thing that needs to happen is that you need to go off of the gluten-free diet for two or three weeks before having that Celiac testing done again. You may need to explain the circumstances to your care provider so they can justify a repeat of the blood work. But I would not assume anything at this point about what is causing these symptoms.

Never heard of that test. There are certainly non Celiac reactions to wheat and gluten but whatever it is it seems clear to me your daughter needs to eat gluten free if you are sure that wheat/gluten are causing these symptoms.

I just want to add, because this was not clear to me from your narrative, that alcoholic beverages are not to be considered gluten free by default. All spirits can contain at least traces of gluten unless they are produced from gluten free grains/plants and stored in containers not contaminated by gluten. As an example of the latter, wines are sometimes stored in barrels that use glues and sealers made from wheat. Having said all that, distilled spirits are generally safe.