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Everything posted by trents

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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?
  7. 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.
  8. 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.
  9. 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?
  10. Sounds like a good plan. Keep us posted from Ennis, TX.
  11. 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.
  12. 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.
  13. 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?
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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?
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. "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!
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