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Wondering


tinstar

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tinstar Newbie

Good Morining new here. About 3 yrs ago my grandson was just a baby and they said that he had celiac diease. They took him to Portland to see a specialist after he was on the diet about 6 moths later and that Dr. said that all the enzymes were normal again and that maybe he did not have it. So my daughter and her husband started feeding him all this reg food again and now all the time he says he needs to throw up and that his stomach hurts. My daughter says that he is just trying to get attention. Then about 2 weeks ago my Dr. finaly found that I have Primary Biliary Cirrohis of the Liver. It is an autoimune problem that I have along awith Graves and Hoshomotos of the Thyroid. So I told my daughter to have him checked again and they said that it was alright . I think after reading all of this that maybe he does have it and so might I. I have a Black Irish background on my birth mothers side. I do not know anything about her except for a couple of thing and cannot find anything else out. Just wondering what you all think? I know that Drs are great but not always right. They were about 5 yrs late in Diagonsing me with the liver and now it is pretty bad. They say I should start thinking about the transplant list. Not for me. I just don't want the celiac to cause any problems with the grandkids. Thanks for you input. Viki :)


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KaitiUSA Enthusiast
Good Morining new here. About 3 yrs ago my grandson was just a baby and they said that he had celiac diease. They took him to Portland to see a specialist after he was on the diet about 6 moths later and that Dr. said that all the enzymes were normal again and that maybe he did not have it. So my daughter and her husband started feeding him all this reg food again and now all the time he says he needs to throw up and that his stomach hurts. My daughter says that he is just trying to get attention. Then about 2 weeks ago my Dr. finaly found that I have Primary Biliary Cirrohis of the Liver. It is an autoimune problem that I have along awith Graves  and Hoshomotos of the Thyroid. So I told my daughter to have him checked again and they said that it was alright . I think after reading all of this that maybe he does have it and so might I. I have a Black Irish background on my birth mothers side. I do not know anything about her except for a couple of thing and cannot find anything else out. Just wondering what you all think? I know that Drs are great but not always right. They were about 5 yrs late in Diagonsing me with the liver and now it is pretty bad. They say I should start thinking about the transplant list. Not for me. I just don't want the celiac to cause any problems with the grandkids. Thanks for you input. Viki :)

<{POST_SNAPBACK}>

Celiac disease is NOT outgrown so if he was diagnosed he has it. It can cause tons of other things. Undiagnosed celiac can cause liver, gallbladder, kidney,and pancreas complications, 40-100 times more likely for cancer, diabetes, thyroid disease(very common among celiacs), osteoporosis...and thats just to name a few.

You should definitely be tested. I can give you the blood tests that need to be done if you would like. Many doctors are not up to speed on celiac unfortunately. This is just one reason why many people are not diagnosed(misdiagnosed or told they are fine) but they do have it. I have lost my trust in doctors. It is genetic so everyone in the family should be tested if one person has it. Hope this helps you out a bit.

LUAP Newbie

Drs are great but not always right.

May be doctors are great but society is not. You have a liver that is damaged. When not because of alcool, you might be interested in the fact that corn, peanuts and pistachio, contain a poison called aflatoxin b1, poison produced by the mold aspergilus flavus. Aflatoxin is well known to cause liver damages as well as cancer, and also cause b and c hepatitis type, when not killing.

On TV screen, instead of broadcast on this subject, you can see publicity about hepatitis vaccin. The position of US government is: Because there is not a lot of case of hepatitis, it shows the government handle the situation (control of aflatoxin in crops). In one word MONEY. Money first, your health is second

Knowing about aflatoxin, wouldn’t you have pay more attention when eating corn. For example, you eat fresh harvested corn and hours later, you get diarea…(why is it happening?, could it be aflatoxin?).

It’s just the same with gluten and your grand children. You might prefer the mysterious theory about celiac disease and the hla gene that touches more than 35% people. Or, if you are interested in science, you will find that there is at least two problems well explained by science with gluten. One is candida albican. The second one is Ochratoxin A. let’s have a look at the second one.

‘ochratoxin A produced predominantly by aspergillus ochraceus and penicillium verrucosum, occurs worldwide in many commodities from grains, to coffee beans, and it is implicated in urinary tumorigenesis in human and rodent. Furthermore, barley, wheat and pork products all appear to be human dietary sources of ochratoxin A’. ( national research council, Carcinogen and anticarcinogens in the human diet, p.62)

‘…although aflatoxin is the most carcinogenic substance on the planet, ochratoxin beats it ten times over in terms of its toxicity and the damage it inflicts on the human body. Despite this, the USDA does not screen for ochratoxin’. (doug kaufmann, infectious diabetes, p.35).

‘ochratoxin has been documented to cause kidney damage in laboratory animals. Scientist also believe that it cause Balkan nephropathy, a form of kidney failure common in central Europe, where ochratoxin has been found in high level in the food supply. Ochratoxin is also commonly found in the blood streams of humans. In 1996, A.V. Constantini conducted a random broad-based study in which 56 percent of his subjects tested positive for the mycotoxin, crop testing in the United states indicates that it commonly contaminates barley, corn, oats, rye, green coffee beans and peanuts. (doug kaufmann, infectious diabetes, p.90)

All that to say that gluten is bad food. Yes some family are gluten sensitive and if I had a grandkid who would have been diagnosed with that disease, that would ring a bell to me. Some people are seeing celiac disease or gluten sensitivity like a weakness (disease). When in fact, it’s a antibody reaction to a real danger. Is it the body that is stupid by attacking itself (the autoimmune disease theory)? Or is it people who are stupid keep on going eating bad food when body is showing clear evidence that it’s not good at all? that is the real question.

jenvan Collaborator

I second what kaiti said... you have to be your own and your family's advocate..as unfortunately, doctors can be mistaken! and stubborn :( it would make sense that he was testing normal about being on the diet--it would most likely confirm his diagnosis for celiac, not negate it! so talk to your daughter and share your concern... other autoimmunes are highly linked to celiac...especially thyroid. it would definitely be beneficial for you to be tested. i am so sad to hear about your liver and condition...it is so frustrating when doctors mistakes cause others to live miserably when they need not. i'm glad you're here now and wish you the best... you must have a good heart, looking out for your grandson ;)

mytummyhurts Contributor
Good Morining new here. About 3 yrs ago my grandson was just a baby and they said that he had celiac diease. They took him to Portland to see a specialist after he was on the diet about 6 moths later and that Dr. said that all the enzymes were normal again and that maybe he did not have it. So my daughter and her husband started feeding him all this reg food again and now all the time he says he needs to throw up and that his stomach hurts.

<{POST_SNAPBACK}>

Wow!! That doctor totally doesn't know what he's talking about. If he had celiac and then went gluten free then of course he wouldn't show up positive for celiac because the gluten is out of his system and he's heathy. He needs to go back on a gluten-free diet right away and stay that way for the rest of his life. celiac disease is not outgrown, many doctor falsely still believe this even though it has been disproven.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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