songcanary

Hubby and I actually survived two hours at a horse show using a spray bottle! It was 100 degrees in the shade and we just kept spritzing ourselves all over and it worked. I was amazed at how something so simple could be so effective. I haven't been to a horse show in ages and it was so much fun!

Well, now I know why I am feeling better on the GF diet LOL. I tested fecal IgA positive for gluten sensitivity. My result was 56 (<10). Right after I sent my sample, I went GF and I immediately felt better. I am so happy I did this test because in the past three years I have twice tested serum negative for celiac disease. So of course I continued to eat gluten. I have been told my entire life that I have a 'nervous stomach and I should learn to live with it'. Grrr, no further comment.

I started exploring the possibility of gluten intolerance because of the comments from members on this site. So, thank you all for that.

I also got the food sensitivity panel. I already know I have a bunch of food allergies, but I wanted to see where they stand right now and I can't get conventional testing because I'm on doxepin and I can't d/c it for testing because my dysautonomia symptoms come back if I do. I was initially concerned that the doxepin would interfere with these results, so I spoke with a nurse at the lab. She was wonderful and told me that it shouldn't affect the test results at all. Whew. Also, I'm on food drops and I asked about that, too. She said that the presence of the drops only indicates that I am eating the food, and doesn't affect the results, either.

So the results of the food testing totally correlate with my clinical reactions. The bad part is that I found a few new foods that I shouldn't be eating, and I eat them pretty often! And that would explain the occasional mysterious breakout of hives. But what I really like about the results is that they categorize all the foods in terms of severity of reaction. So I can plan my diet to avoid overloading my immune system while still getting a pretty good variety of foods.

The summary of results was three pages long and goes into great detail. It is very helpful. The cost is crazy high and not covered by insurance, but for me it was worth it. Plus, I got the most expensive panel, and there are many other choices. I am SO glad I found out about this gluten thing. Even though it limits my diet even more, my stomach has been thanking me for three weeks now and I am hoping it can only get better from here.

This is a lovely gesture. My own grandmother had a history of fainting and upon reflection, I am certain that she had some sort of dysautonomia. I wasn't diagnosed until long after she passed.

Could you accompany her to a doctor visit and ask about it? I think it would be a nice thing to do and it certainly wouldn't do any harm.

I went through this. In my case it was a combo of ferritin deficiency and hypothyroidism. By the time I got diagnosed I had lost half my hair. I was in a pixie, ugh. If stress is your cause, try bumping up the biotin or take one of those formulas for nails and hair. Even so, it will take at least six months for regrowth. It's such a slow process!! I feel for you.

Wow, thanks Doozlygirl,

That's a great explanation. I wish YOU had been there when I was tested! Although in fairness, I must say that my techs were wonderful and I probably just don't remember what they said.

Well, I do remember that I was given a card to show airport security because apparently I would set off the alarms for three days!

Rich, I had it done two years ago at CC with Dr. Fouad. I had many other tests that day so it's kind of a blur. I remember lying on a table for a long time with a camera above me that took pix every few minutes or so, after they injected the tracer. The tracer initially made me very nauseous but it passed quickly, thank goodness.

Well, I took the plunge and sent my sample to Enterolab. I did the antigliadin IgA plus the entire IgA food panel. I cannot WAIT to get these results. I spoke with a nurse initially by phone who answered a question, then I emailed later and got a very prompt response to another question. I have read very positive reviews online about this lab and my impression so far is very good. They have been professional in every way. Wish me luck, I'll post my results when I get them!

Marsha

P.S. The best part is that I am told doxepin does not interfere with the testing. With conventional IgE testing I would need to d/c it for six weeks. I tried and cannot function without this drug.

Yes, don't you just love all the rescue workers--they have hearts of gold. I am glad you are back home and safe.

I agree. Florinef to the rescue in my case, too.

Puppylove,

At least you had the guts to try. I haven't left the house overnight since 2006. I remember that you recently had a nice day at the zoo. That was an accomplishment. Those little steps, they do count.

Marsha

Sending my very best wishes for a safe return home. The fires are bad enough without having to leave when you are sick. I hope everything goes OK, take care!

Tell me about it. And BTW, that doctor states that most food allergies happen sooner than six hours, which is not true. Most food allergies are delayed, including mine. I can have hives and itching anywhere from three hours to three days later. SOME people have immediate reactions but that is actually the less common (but more serious) type.

He also states that it is unusual for adults to develop food allergies. So I'm the only one? I think not. Sigh...

Wow, Linda Joy. That is really something. One of the 'benefits' of having dysautonomia is that we recognize the symptoms in other people, often before the doctors finally do, if ever. Your husband is lucky that you are getting help for him. I hope you get some answers soon and I hope YOU are feeling OK.

Marsha

This is quite fascinating. It is a beautifully written account of this man's struggles. I wonder how he is doing today. Thanks for posting.

Thank you both so much. I am now also remembering a recent episode that involved a hamburger bun. Hmmmm.....the plot thickens. LOL. I actually have been gluten free more than once because my husband was also trialing it last year so I am used to shopping that way. However, I am, unfortunately, terribly allergic to corn. So I can't eat Udi's. Corn allergy is very limiting. But because of your comments and my poor tummy, I am starting GF again today.

Kayjay, you are so right about the testing. I don't know why we have to be guinea pigs all the time. But for now, that's all we really have. So here I go again . Gluten or no gluten, I just want a normal stomach. Or a NEW one altogether.

Interesting comment on gluten. Oh, and I couldn't really answer the question directly because I have kind of a combo! Plus, today I had a very bad stomach cramping episode followed by two bathroom visits. And this was directly after eating a PB&J sandwich on whole wheat. Plus, a few days ago I had the same reaction after eating homemade cookies with just a fraction of wheat flour in them. I was blaming it on the walnuts but I usually can eat those just fine. So it was really weird.

A few years ago I tested negative twice for celiac disease with both bloodwork and endoscopies. But the second time, I had been gluten free for six weeks so I don't know if that one counts.

But I am wondering if it is possible to have a false negative. Can anyone gluten literate answer this? I had pretty much written that off as a problem for me but I am starting to wonder again.

Jen,

This is what happened to me when I started to feel better. When I had the occasional good day I would say to myself 'Oh great, another one of life's little practical jokes'. But over a period of about a year, the good days became more and more frequent. I really hope that happens to you. Wishing you all the very best!!

Marsha

I agree. You need to adjust. I had to give up a full time self employed job I thrived at. I mean, I was very successful and had many, many loyal clients. I ended up working for another pet sitter and now I only make a percentage of my former wage and I work when I can get it. Believe me, it was a real kick in the pants.

But I also feel very grateful to my friend for taking me on. And my stress level is WAY down. You are very fortunate that you don't need a big salary to live on. For this I was grateful as well. My husband, thank God, is able to support us both. I do feel a little bit robbed of my autonomy but that is something that we all deal with on this forum. I feel grateful for all the good life brings and dysautonomia is definitely a detour, but it isn't the end of the road.

Ah, things are looking up. I am so happy for you!!

Marsha

Katybug gave some excellent advice. I wish I had done all those things myself! Welcome, Jackie, and I hope you find some answers. This is a great forum.

I had to visit my husband when he was in the hospital with pneumonia. It was way before I felt well enough. I found that putting a cold pack on the back of my neck really helped me. Even when I was sitting. I was only able to visit once a day, but he understood. I hope all goes well for you.

This is a really good article. Thanks for posting! It offers a lot of hope, too.

Had to laugh Angelloz. You are not the oldest--I am 57, so now you can feel young!

Jacquie802,

By far and away nausea is my worst symptom. I am always worried that it will hit me from out of nowhere. I wish we could bottle it and kick it to the curb. I need to watch my fluid intake as well, and sometimes when I'm feeling well I might tend to forget it. That is why I fill a 2L bottle every day with salt water and make sure to finish it by day's end.

Also, doxepin has been a lifesaver for nausea. I am sensitive to meds and can't tolerate many, but doxepin agrees with me.

I frequently had this same feeling early on in my illness. I remember talking to a good friend and then afterwards wondering if I was dreaming it or if I was really there. And that same thing happened many times. Since I've been practicing yoga and fluid/salt loading, it is infrequent. So I take it as a sign of dehydration, at least for me, and make sure to drink enough. But I really don't know if that is the cause, it's just a big guessing game really. I have a glucometer and I have never had low blood sugar during these spells. I only wish it were that obvious!