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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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    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
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