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Could It Be Something Else?


JillyO

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JillyO Newbie

Hi, have a question for anyone who can help. I have a few autoimmune diseases. Hashimoto's Thyroiditis/Grave's Disease, auto-immune arthritis etc. About 9 months ago I started to have a rash on my upper arms, back of my thighs and butt. Primary doc said eczema, another autoimmune issue. I have not been able to control it to date. I started to have some neurological issues such as feeling water on my fingers and legs when there is none there and tingling around my lips, neuropathy etc. The neuro doc did a nerve test and a blood test of things that can cause neoro symptoms and the blood test came back yesterday with a positive Gliadin IgA of 38.2 and a positive Gliadin IgG of 20.9. He said I almost certainly have celiac but is sending me to a GI doc to confirm. I've always had gastro symptoms but chalked it up to just a sensitive system, other diseases and I have pretty bad GERD. I have been reading this site and the thought of having to follow this strict diet is very scary to me along with adding ONE MORE autoimmune disease to manage into the mix. My question (after all of that!!) is: Does anyone know if it is possible that it could be something other than celiac or does a positive on these 2 tests mean that I am likely looking at a positive diagnosis? I appreciate any input that anyone can give me on this. I'm feeling very anxious as I wait for my appointment. Thank you!!


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1morething Explorer

Hi Jillio,

Sorry to hear about all these autoimmune problems you have. I'm afraid that the positive blood work pretty much confirms that you have Celiac. I'm in the same boat as you, I have Type 1 Diabetes, Thyroid problems and Celiac (diagnost Oct 7th with a Positive IgA blood test). I got a biopsy done Nov.12, but that was just to see how much damage I had to my Villi. My GI told me that with the prior autoimmune problems, it's no surprise that I have Celiac. I just wonder how many more diseases will I get before my time is up. I'm only 37, so I have a while to go (hopefully).

Depending on when your GI appointment is, it's up to you if you want to wait for the biopsy, or just start the gluten free diet.

Good luck to you, Keep reading these posts, they really help.

Rachel

gfpaperdoll Rookie

Well the good thing about celiac is that once you are on the diet your other health issues should improve or go away entirely. It is shocking at first, but we do eat really well, with a wide varied healthy diet. Your diet can be not so healthy if you like & still be gluten free - lots of snickers, potato chips, fritos, ice cream, sodas, gluten free cookies...

the worst thing for most people is breaking the fast food habit. We really can come home from work, classes, etc & have a meal on the table in 30 minutes or less. It just takes getting used to cooking & doing prep work & keeping foods in the freezer & refrig.

Once you are gluten free (& it takes awhile, it is hard to learn what you can & cannot eat, & even that changes as companies change their ingredients), you will feel so energetic & healthy that you will not want to go back to the old way of eating. You should not pick up any other autoimmune issues once you are gluten free. Especially if you eat a healthy diet, & limit the gluten free grains to occasional treats.

It takes about 3 weeks to get over the addictive effects of wheat ( the grain most common of the gluten grains which are wheat, rye, barley, & oats, well you are advised to not eat oats, some people do, but certainly at first you should not eat any oats, or soy. A lot of us have a problem with soy).

You will probably not have food cravings either after you are gluten free. You should be able to have a piece of delicious gluten free cake & enjoy it without "having" to eat three or four pieces. People think that they are just hungry or that they really like cake, but really the gluten in the wheat has an opiate effect on your brain & makes you want to eat more. The gluten free grains do not do that to you.

So just take one day at a time, be grateful you do not have to take any medications for celiac & enjoy your new journey into good wholesome food.

ravenwoodglass Mentor
Well the good thing about celiac is that once you are on the diet your other health issues should improve or go away entirely. It is shocking at first, but we do eat really well, with a wide varied healthy diet. Your diet can be not so healthy if you like & still be gluten free - lots of snickers, potato chips, fritos, ice cream, sodas, gluten free cookies...

the worst thing for most people is breaking the fast food habit. We really can come home from work, classes, etc & have a meal on the table in 30 minutes or less. It just takes getting used to cooking & doing prep work & keeping foods in the freezer & refrig.

Once you are gluten free (& it takes awhile, it is hard to learn what you can & cannot eat, & even that changes as companies change their ingredients), you will feel so energetic & healthy that you will not want to go back to the old way of eating. You should not pick up any other autoimmune issues once you are gluten free. Especially if you eat a healthy diet, & limit the gluten free grains to occasional treats.

It takes about 3 weeks to get over the addictive effects of wheat ( the grain most common of the gluten grains which are wheat, rye, barley, & oats, well you are advised to not eat oats, some people do, but certainly at first you should not eat any oats, or soy. A lot of us have a problem with soy).

You will probably not have food cravings either after you are gluten free. You should be able to have a piece of delicious gluten free cake & enjoy it without "having" to eat three or four pieces. People think that they are just hungry or that they really like cake, but really the gluten in the wheat has an opiate effect on your brain & makes you want to eat more. The gluten free grains do not do that to you.

So just take one day at a time, be grateful you do not have to take any medications for celiac & enjoy your new journey into good wholesome food.

This is one of the best posts for newbies I have ever seen and it is sooooo very correct.

The diet seems daunting but the trade offs for relief and remission of so many things make the effort so worth it. I didn't have this board when I was first diagnosed and didn't believe the doctor that diagnosed me when he said that so many of my other autoimmune related issues might go away. I was just happy not to be up with literally gut wrenching D for 2 hours every night and continuously going, unless heavily medicated, during the day. And boy was I heavily medicated and still in incredible pain.

The diet does take some getting used to but you have found a great place to figure out what you need and to ask any question you need to.

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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
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