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Why Is This Such A Popular Condition For People To Self Diagnose With?


silvertail

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Crimson Rookie

Honestly, I don't know how I can really add much to this amazing topic. I am self diagnosed. I have no insurance. Doctors are expensive. Experienced doctors are hard to find. Specialists are even more expensive. When you have skin issues related to gluten, you go to a dermatologist. When you're having GI symptoms, you go to a GI specialist. When you're having reactions to other foods, you go to an Allergist. Problems with joint pain, Rheumatologist.

All those doctors add up faster than I can even begin to tell you. As do their costs.

Weigh that with just giving a Gluten free diet a chance... try the diet, get better... no expensive tests, doctors or specialists doing invasive procedures... I'm sold!!!

My take on WHY gluten intolerances and Celiac Disease is so prominent in our society today....

We started eating more grains *particularly wheat*, processed foods than ever before. And found cheap, efficient ways to package, store and make additives out of it. It's now in everything!

Next, scientists, in an effort to make our food better, started genetically modifying the grains *especially wheat, corn and soy **technically soy is a legume, but that's beside the point*.

Wheat is modified so that the grain is bigger, stronger and has more protein. That protein is mostly gluten. So, we're not just eating more gluten grains, but gluten grains with more gluten in them.

So, if you're genetically predisposed toward having issues with gluten and you eat more of it. *FDA recommends grains to be somewhere around 60% of your daily caloric intake* And the grain itself has more gluten than EVER in human history due to genetic modification...

Well you can see where that can lead to issues. Yes?


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shivermetimbers Newbie

25 years of doctors and all I got was steroids, antibiotics, antidepressants etc. It was a constant ride down hill. After all those years only getting rid of gluten helped. So many ailments just went poof or in constant remission since then. No way I'll ever touch it again for a diagnosis.

The treatment the last doctor I saw recommended was Ciclosporin. A immune suppressant for transplant recipients! Thanks, but no thanks doc.

chasbari Apprentice

This whole discussion almost brought me to tears.. a major near accomplishment in light of my Sjogren's syndrome... to go with all the other autoimmune symptoms I have been dealing with for decades that are slowly getting better as I stay fastidiously gluten free. It is hard enough staying gluten-free here in a mixed household with caring family members. I used to work in restaurants years ago.. all the more reason I will not be ready any time soon to be trusting enough to go to one and risk undoing all the healing that I have experienced in the last year after a lifetime of undiagnosed pain and skepticism from the usual vast array of medical professionals who were unable to make a proper diagnosis over the course of four decades... so... it certainly must have been in my head. Fortunately I do have an official diagnosis at the hands of some very good medical professionals after a lifetime of searching but not quite getting it right. Oh, I am a middle aged male, BTW and am more than willing to educate those around me and share, especially when I have so many friends and acquaintances who seem to be dealing with many similar issues who are unwilling to even consider they too might be suffering from gluten issues. I have already shared this in the past but I still vividly recall in my nursing nutrition course in college the day we covered celiac/tropical sprue where the professor related that it was rare and very unlikely that any of us would have any cases to deal with.

I am a staunch believer that words mean something and you, as a waiter, might be conveying much more than you realize in your overall unintended tone when presented with paying customers who make such requests. I notice that you have not chosen to engage in further discussion once you started this whole thing. I am glad you did. This discussion has now become required reading for my family as the articulate responses spell out a lifetime of frustration in a way I can not even begin to convey as I get all tongue twisted and emotional as I try to condense into a sentence a response that makes sense. I am ever grateful for this board and all here who make my life just a little more sane!

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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. 
    • trents
      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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