trents

https://www.beyondceliac.org/research-news/View-Research-News/1394/postid--113788/?utm_campaign=Research%20Opt-In&utm_source=hs_email&utm_medium=email&utm_content=72057667&_hsenc=p2ANqtz-8yrOYJPTT1rDzm2fM-8c6LNDfji6dWJBX6wgzPHwxkG5NAnnnX8dB-mRkjQxwnBpdS6lACeNHo_2tE-jEk-0ThBe1yEw&_hsmi=72057667

This study provides information that may be relevant to understanding RCD - why some don't experience remission despite eating gluten free. New gene studies show there may be a genetic basis to this phenomenon.

For me, seems like there are times when the immune system just gets cranky for some reason and I get extra aches and pains until it settles back down. It's good to keep in mind that people with celiac disease have dysfunctional immune systems that seem to have a mind of their own. It's also extremely common to develop other autoimmune diseases once you get the first one.

All this continues to point to the need for an effective vaccine or gluten neutralizing oral agent. We're losing the battle with regard to gluten-free eating.

One of the dynamics in these things for couples and households is having to compromise with the other people involved so as not to be able to tailor your diet to the degree you would like to. And I don't find it very practical to try to eliminate canned and processed foods from your diet when you live in a place where fresh foods are not available much of the year.

What about frozen veggies? Are they probably going to be better than canned? You would think that freezing would dramatically slow down or stop the degradation that creates histamines. Of course it might depend on how long the green beans sat around in the processing plant before being frozen.

FruitEntusiast,

I appreciate your post as it made me think histamine intolerance may be be causing my headaches and migraines that I seem to get during the night when I'm sleeping almost every night, especially in the spring season. I'm thinking my histamine levels are always elevated from various low level food-related allergies and various environmental elements. Then when spring pollens start being added into the mix it just pushes me over the edge.

Your post has caused me to investigate histamine intolerance the last couple of days. But from my research it seems like a very difficult problem to address with any degree of confidence in the sense of coming up with any definitive answers or solutions at this point in time, given the state of the science.

I've had allergy testing done a couple of times, once using the skin prick method and another time using the serum testing method. The discouraging thing, first, was that there was little agreement between the results of the two tests, giving me little confidence that allergy testing has much validity to it. This confirmed a lot of what I had read and the lack of interest that many physicians exhibit toward allergy testing. The second discouraging thing from those tests was that both found I was allergic to like 30 different common foods. That would make an elimination test diet very challenging. You got to eat something besides rice and potatoes to be healthy. I envy those people who have discovered through experience that only one or two foods trigger their reactions.

cyclinglady, this link you included in your post: https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/, I found to be very relevant to what I am experiencing.

What does NCGI stand for? We have become a culture of acronyms.

I note your forum handle is FruitEnthusiast. Your probably already know this but some fresh fruits and lots of other foods either trigger the release of histamines or are antagonists for the enzymes that break them down: https://theceliacmd.com/articles/histamine-intolerance-causing-symptoms/

Several of you have mentioned multiple BMs daily as a symptom of refractory celiac disease, relapse, cross contamination, etc.

I just want to say that having more than one BM daily is not necessarily symptomatic of a disease process. That is quite normal for a lot of people, as is not having a BM every day. It certainly can be, particularly if it is clearly a departure from your norm in the absence of dietary or lifestyle changes or if by "multiple" you mean several a day, especially if the consistency is quite loose.

I think that as Celiacs we tend to give more attention to healthy eating habits than most people do anyway because we are already vigilant. That often includes getting more fiber and eating more "plain" foods than most people do like fruits and veggies that stimulate the bowel.

It seems to be normal for me to have a fairly "big one" in the morning after breakfast and then a smaller one in the afternoon or evening. I'd rather have it like that way than being constipated. I hope I'm not getting too personal here.

Better I think for the sake of input from he community if you will copy and paste the lists into a post.

Not that I know of. 

I'm assuming you are referring to foods that are high in starches and proteins. Most foods that are classified as a starch will have some protein (e.g. grains and tubers) and many foods that are classified as protein will have some starch (e.g. legumes). 

Can you give some specific examples of food combinations that give you problems?

The short answer to your question is, "yes." In fact, I've come to the conclusion that your experience is not the exception.

I have not heard of any association of celiac disease with leukemia. 

Can you provide a link to a website? You say you saw something on the web that seems associate the two diseases.

I think you are probably correct. What threw me was the clause, "an abnormal population of white blood cells in the gut." That could be taken to mean abnormal in kind or abnormal in concentration. If taken in the latter sense then it obscures the difference between "unresponsive celiac disease" and "type 1 celiac disease" since type 1 is defined as having a concentration of less than 20% of these white blood cells. So it must be abnormal in kind as you indicate.

For sometime I haven't been keeping a close watch on celiac disease research like used to but I ran across this and it caught my attention: https://www.beyondceliac.org/celiac-disease/refractory-nonresponsive-celiac-disease/

First, I didn't realize that "non responsive celiac disease" is different than "Refractory celiac disease" and neither did I realize that there are two categories of Refractory celiac disease, I and II. I'm still not entirely clear from the article what the difference is between non responsive and refractory but from what I could gather it seems to be that refractory celiac disease is the term applied to those who truly are avoiding gluten altogether.

At any rate, the numbers for all those categories are way higher than I expected and it's kind of discouraging. I think I fall into one of these groups.

First, it is very common for autoimmune diseases to come in bunches. If you have one it is very common to develop others over time. And yes, they do run in families so you come by these things honestly.

Second, it is a well-established fact that many Celiacs never experience complete gut healing, even when they make a sincere effort to eat gluten free. Cross contamination may keep it smoldering but there may be also other issues that prevent some Celiacs from healing that we don't completely understand but have nothing to do with gluten ingestion. The term is "refractory" Celiac disease.

Third, I don't mean to be nosy but why is it you say you wouldn't be able to tolerate and endoscopy/biopsy? They use a method of sedation that doesn't put put you completely out but eliminates the discomfort (at least you won't remember it). Called conscious sedation. I've had it done multiple times and it wasn't a frightening experience by any means.

Could there be a stress component to this?

I remember how stressful the start of grad school was for me, and the gearing up for it. Stress manifests itself in different ways with different people but for it to precipitate GI issues is a common one.

I wonder if you have IBS, especially since you state that before these latest issues you frequently had to use Imodium.

Seems like spicy food is not agreeing with your GI system lately. I suggest putting yourself on a bland diet for a period of time and see if the symptoms improve.

Do you have Celiac Disease and if so, are you being scrupulous about avoiding gluten? You make no mention of this one way or the other. Or are you just gluten intolerant?

Surely, some doctor thought to test her for Celiac disease. Is this made up or a real case? I'm hesitant to sign up so as to be able to offer a dx suggestion. I just don't trust that I won't get on a bunch of spam lists.

Are you having a lot of diarrhea? If so, that could explain your thirst and also produce mineral depletion.

Acid reflux is common among celiacs. I have that and am on medication for it too.

Leg cramps are often caused by mineral deficiencies (magnesium and potassium) and dehydration. Being a celiac, you may not be absorbing these minerals well from your food because of villi damage.

On top of that, if you are urinating excessively and drinking excessive amounts of water you may be flushing out from your body and/or diluting these important minerals. One suggestion I have is to try using one of those sports drinks such as athletes who sweat a lot use that contain these minerals or start eating food that is high in magnesium and potassium. You can research that. Nuts and seeds are generally good sources of magnesium and oranges and potatoes are high in potassium just to give you a starter list. The more important question is why are you so thirsty and feel the need to drink so much water? That question needs to be answered. If you are diabetic I would think by definition you would have sugar in your blood.

The upper quadrant stomach pain you describe could be due to acid reflux and or a hiatal hernia. Not common in your age group but not unheard of either. It could also be caused by an ulcer. This may be a separate issue not related to the thirst and leg cramps. Has anyone suggested an endoscopy to take a look at your upper GI condition?

Are you strictly compliant with your gluten-free diet?

Sounds like a good plan. Keep us posted from Ennis, TX.

It seems clear to me that you are having gastroparesis if you are upchucking remnants from breakfast the day before. Normally, food passes from the stomach into the duodenum/small bowel within about two hours and then makes it's way down to the colon for elimination within about 24 hr. This sounds serious and I would make every effort if I were you to identify some medical resources that will allow you explore the issue. Even for those without the means to afford good health plans there may be some state sponsored health care resources available. Please pull out all the stops and see what is available.

People with celiac disease are at a statistically higher risk of developing other autoimmune conditions, many or most of them involving inflammatory processes. Things like chronic pain syndrome and lupus and RA. Perhaps this bears looking into.

Edit: My other thought is that you may not be allowing the injury to heal because of your daily activity level or exercise regimen.

Feeling the need to void frequently and not feeling you have emptied the bladder completely when you do sounds like it could be a bladder infection. Is urination painful? Is their any blood in your urine? You say you "made some tests for my urinary problem" and "no ecoli infection" but has anyone checked your urine for other infections?

May we ask how old you are? Could some of this issue be from an enlarged prostate? Do you have difficulty in passing urine? Has there been any talk about a bladder scan?

5 hours ago, FugNasty said:

Go home trents...your drunk.

I beg your pardon! I hope you will take the time to research the issue of arsenic and rice. Cycling lady has given you some good places to start.

One potential risk of the gluten-free diet is arsenic toxicity because of all the rice-based substitutes we typically consume in order to compensate for not being able to use wheat. Rice is naturally higher in arsenic than other grains and this can be exaggerated when the rice-based products we use are made from rice grown in areas of the world where there are high concentrations of that mineral in the soil.