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After 7 Years, I Think I Got It


richarda83

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richarda83 Newbie

So after 7 years of going to doctor to specialists to surgeon, somehow I dont know how i missed this. As I am sure many of you have experienced, in your pursuit to discover the cause of your ailments, you get very excited when you THINK you found something, and then you look silly. At many points I have convinced myself that I have AIDs, lupus, sinusitis, gastritis, in need of lymph gland cleansing, had a larger than normal lymph node removed from my neck, had my deviated septum fixed to clear my sinuses, and rounds of antibiotics, antacids, anti fungal, etc.etc.

So fastforward to today, after NUMEROUS jobs, dropping out of college, failed relationships, and a quality of life my 90 year old grandman would feel sorry for, I believe I have found my ailment. I am willing to look silly, because never before have I realised that after I ate a piece of bread the pain in my stomach, irritability, eyes watering, hands and cold and whole body pretty much freezing, that I could be allergic to gluten. So i googled every symptom I suffer from and continued it with celiac disease and COUNTLESS search results came back. I have swollen lymph nodes that were biopsied non cancerous that have fluctuated in size minimally but emit sharp pains via the stomach. I have had sharp pains throughout my body, foggyness in my head, depression, SEVERE anxiety, hair loss, and paleness. I did have allergy testing done but I dont believe I ever had a gluten test done, and by the looks of it, a negative test is meaningless. All I know is after I ate that piece of plane bread today on an empty stomach, I felt like crap, and still feel tired. I just wanted to say to everyone that while I will not confirm my diagnosis until it is professionally given, I am very quite certain I will be a future member. While I do not look forward to a restricted diet for the rest of my life, I would give anything to finally end the 7 year misery that I have endured. I will be going in for testing tomorrow, and I actually hope I get the answer im looking for. Thanks!


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Bubba's Mom Enthusiast

It sure looks like you might be one of us?

Good luck with your testing. I hope you get some answers.

Be aware that 20-30% of us test negative in our blood work, but do in fact, have Celiac. There's also non Celiac gluten intolerance, so once your testing is done try gluten-free 100% and see how you do?

kittty Contributor

This sounds cruel, but I hope you do test positive for celiac. It's just incredible to have answers, after years of beating your head against a wall. I was also at the doctors office constantly, getting no solutions, being sent to random specialists, and being prescribed random medications with no relief. I still don't feel completely well five months later, but I feel so much better! Nothing has ever made me feel better before, and it's a long road of recovery ahead, but making progress feels awesome! I hope you start feeling better soon, and especially hope you get some relief for that anxiety - that symptom is my nemesis. I learned to deal with the pain, the diarrhea, the brain fog, but I NEVER could learn to handle the anxiety.

Good luck!

GFinDC Veteran

HI,

It sounds lie you could be one of us. Do get all the testing done that you want before going gluten-free. The tests will not work if you have stoped eating gluten before hand.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

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?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

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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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