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Questions From A Newbie


Joyful

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Joyful Newbie

When you are glutened, do you get confusion and memory loss?

I started noticing this a few months ago, after meals. I wouldn't be able to concentrate or remember things after eating grains, coffee, cheese... gluten protein analogues. I'm currently trying to get a doctor to consider celiac. I tested negative for alpha-gliadin, but I swear one night after three bites of oatmeal, I thought I was going to end up in the ER. There is something going on.

I'm thinking of ordering the Cyrex labs tests. Anyone tried them? Would you recommend a certain test?

I stopped eating all gluten protein analogues and I am feeling tons better, but not cured. How long does it take the gut to heal? Fasting seems to help. What else can I do?

Is there some sort of insoluble fiber I can take that is NOT psyllium? Does fiber help or hurt?

Sorry for all the questions. I'm so desperate to learn.

Thanks so much!

Joy


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Adalaide Mentor

One of the symptoms of celiac is what I learned from this site to call brain fog. Fortunately for me, although I suspect I suffered from celiac my whole life I only suffered from brain fog for about 3 or so years. I felt like I lived in a surreal world. I got very ill shortly after being married and while I remember big moments, I remember absolutely no small details. I've lost pretty much most of my marriage to celiac. If I get cc I feel disconnected from the world, sort of like it just kind of isn't quite real. I never discussed this with my doctor the entire 3 years I felt this way because I didn't want to end up in the loony bin.

Blood tests can be useful. I don't remember which ones in particular but someone else will, but they aren't always right. My blood tests came back negative although they were done the same day I had a biopsy done that came back positive. Since you are still eating gluten, I would suggest having the biopsy done. Then, no matter the results follow your gut. If you feel like it could be a problem, eliminate from your diet and see if it helps. If you feel better not eating it, then don't eat it. Just remember, you can't test if you aren't eating it.

GFinDC Veteran

Hi,

Here are some threads that may help.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

How bad is cheating?

ker0pi Rookie

Hello,

I am a "brain fog" sufferer. It was my first symptom, I thought my pregnancy "baby brain" just never went away. I was so forgetful and that was something I had never experienced in my life, I work with numbers and could quote any figure from a financial statement I had just looked over, that went away. I kept blowing off my husbands concerns, telling him it was completely normal to be a scatter brain after having a baby. Well my baby is turning 6 next week and I'm still scatter brained, much improved after going gluten-free 4 weeks ago. I had some other joint pain and balance issues that went away as soon as I went gluten-free. I tested negative in my Celiac Panel but went gluten-free anyway and for me, that was most definitely the problem. Now that I've been gluten-free for 4 weeks I have really reflected and realized I had plenty of other symptoms over the years that point to Gluten Intolerance or Celiac. I decided not to push for a biopsy myself because I have a really horrible reaction to general anesthesia. The improvement I have had after just 4 weeks is enough for me to stay strict to this diet.

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    • 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
      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.
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