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What's My First Step?


Fettucini

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Fettucini Newbie

Does anyone know where I can be tested? I have low income, and no insurance.

What level of testing (if any) would be appropriate for me given my symptoms:

- difficulty focusing, forgetfulness

- headache

- diahrea, loose stools

- depression/fatigue

- feeling a need for nurishment, even when full

Also, I am thin despite eating plenty.

I have been unable to clearly establish a link between eating wheat and my

symptons. If there is a link, there seems to be a delay of three days to a week.

This delay (and perhaps lack of mental clarity) makes it difficult for me to know

whether of not I am imagining the connection. I do not have any obvious

increase in symptoms on the same day I eat wheat, even in large quantities.

My understanding is that the response time to wheat among people with celiac

disease varies. Is three days to a week typical?

After avoiding wheat for a couple months, I noticed improvement, but this could

be due to a variety of unrelated causes. Casein or lactose intolerance may be

another suspect because I was severely allergic to milk as an infant.

I am starting a spreadsheet to track diet and symptoms over time. This should

be useful in any case.


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Fettucini Newbie

BTW, I am in the Santa Cruz, California area. Any thoughts about how

I can find a good clinic that can to celiac screening?

celiac3270 Collaborator

I know what everyone else will recommend so I may as well say it now: Open Original Shared Link. You get advice on what tests to take (and they're supposed to be more inexpensive)....you have choices on how many and which you choose to take. Someone else can give you more info. I haven't taken any tests there, but many others have.

-celiac3270

tarnalberry Community Regular

If you're trying to do a dietary challenge for gluten intolerance, don't forget that just cutting out wheat is not enough. You have to cut out anything that has or is made from wheat, barley, rye, and oats. Have you gone over the safe/unsafe list on this site?

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    • 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
      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
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