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Benefits To "official" Diagnosis


AHopewell

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AHopewell Newbie

My journey was totally accidental. A friend and I decided to try the Paleo way of eating at the suggestion of a personal trainer. Lo and behold, I felt like a million bucks and shed the symptoms that had plagued me for years. I started considering the family history on my mom's side of the family along with my symptoms. What a revelation! Many maternal relatives of my mother had contended with and ultimately died from a variety of auto-immune diseases. My mother is celiac, but denies it. Her mother died from complications of scleroderma. I have a cousin who is diagnosed celiac. So without a doubt, it is running on this side of the family. At any rate, here I am. My question to those who have been diagnosed via lab tests, is there a real benefit to "official" diagnosis knowing what I already do?

Amy

gluten-free since 2/20/11


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psawyer Proficient

Having a diagnosis can be useful in certain situations where you must depend on others. Having the document ensures that schools and the like must take your dietary needs seriously, and you can demand reasonable accommodations under the Americans with Disabilities Act (ADA).

Having a diagnosis can, however, lead to difficulties in obtaining insurance. It will also prevent you from joining the US military.

kareng Grand Master

A few more " benefits":

If you have kids, most insurance & doctors are good with Celiac testing as its genetic because the mom or dad has Celiac.

Gives your doc & insurance company a reason to approve various tests that go with Celiac like Thyroid, vitamin deficiencies, bone scans, etc.

Gives you a doctors note to use when bringing food into places that don't normally allow that

Sometimes places like a hospital, will try to give you gluten-free food with a diagnosis.

Some docs consider an unofficial Celiac to have a mental or eating disorder. Looks like some consider a diagnoses Celiac to have a mantel disorder, too. :(

You have to decide if any of these things are worth 3 or more months on a diet heavy with gluten.

adab8ca Enthusiast

For me, it ensures compliance. I did not have many GI symptoms and it has taken a LONG LONG time for other things to resolve themselves, so I wouldn't believe it if I didn't have the official diagnosis.

Skylark Collaborator

Can I answer from the other side? I'm pretty sure I am celiac but like you I figured it out on my own. I was never tested, except in childhood when I was already off wheat becasue it made my stomach hurt. (Celiac enough for ya?) I was told I didn't have celiac and my problems were "wheat allergy" even though I barely reacted on skin tests. I stick to the diet just fine. Most of my childhood comfort foods are naturally gluten-free anyway since I was off wheat. B) Two different doctors have told me not to gluten challenge becasue it will make me ill and it's too hard to get a positive celiac test.

AHopewell Newbie

Really great points, all. I appreciate it.

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    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
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