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10 Months Post Diagnosis, Struggling With New Symptoms

rain

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rain Contributor
rain
Posted

Hi, I feel crazy - 10 months and I'm still struggling with symptoms that I don't understand.

Early in the diagnosis the foggy headedness, the constant eating and never feeling satisfied, the gluten ataxia all subsided. Emotionally I was feeling more even, and anxiety was clearly fading. I feel so much better and am so grateful that it's been real easy to stay away from gluten. It's made me utterly crazy to figure out what to eat but I'm managing.

What is making me crazy is this whole world of new symptoms. Are they celiac related or not? In the last few years I've had chest tightness (I'm asthmatic but this is different from what I've had before.) It continues and doesn't improve. Unbelievably bad exzema since going off gluten. A persistant rash that erupts on the sides of my chin. Started with an outbreak due to sun exposure and continues on. It's driving me batty. Plus it hurts. Body stiffness and a really weird tiredness. Not deep fatigue, that is gone but a sort of disconnectedness. Sinus congestion constantly.

I've just taken out oats.

I don't eat dairy.

I've taken out nightshades.

I'm cutting fruit back to one piece a day and will likely cut that out.

I take a multi-vitamin, lysine, extra C. I've started on ayurvedic herbs.

I use vanicream lotion which burns but I'm allergic now to all other lotions and oils except coconut oil and vaseline.

I'm soooo edgy

Any thoughts? I just discovered the center for celiac research in Baltimore. I'm going to try to see if they can help me.

Thanks!

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Katie B Apprentice
Katie B
Posted

In terms of food intolerances (and it's probably hard to tell if that's what's the cause at this point) you might want to contact the dieticians in Australia (Shepherd Works or Diet Solutions) to do an elimination diet. It's very difficult to do this on your own (although possible). They advocate the low-FODMAP diet. I wouldn't automatically attribute all of these symptoms to a food intolerance/allergy but it's a variable you can control so it's worth doing.

rain Contributor
rain
Posted
  • Author

Thank you! I have an appt now (I can't believe it, finally) at the Center for Celiac Research so hopefully now I'll get some real help rather than flying solo. Apparently they work as a team of docs rather just a gastro or nutritionist..

I was up til 1:00 last night scratching and feeling so unbelievably uncomfortable and of course I continue to feel worn out today. But I'm sure it will get better. It has too!!

Thanks for listening.

GFinDC Veteran
GFinDC
Posted

Thank you! I have an appt now (I can't believe it, finally) at the Center for Celiac Research so hopefully now I'll get some real help rather than flying solo. Apparently they work as a team of docs rather just a gastro or nutritionist..

I was up til 1:00 last night scratching and feeling so unbelievably uncomfortable and of course I continue to feel worn out today. But I'm sure it will get better. It has too!!

Thanks for listening.

Have you tried eliminating soy? Soy is a problem for some of us.

  • 2 weeks later...
rain Contributor
rain
Posted
  • Author

Have you tried eliminating soy? Soy is a problem for some of us.

Ok, so I've now taken out soy. (I need to figure out how to do it since I use soy milk and butter so regularly.)

Today I'm wearing a turtle neck because my neck and chest are red and raw with the rash. I'm also in a fair amount of low grade pain. I can't wait for the doc appt. I really hope this is all still celiac and not some other complication.

Thanks for the nudge on soy.

shopgirl Contributor
shopgirl
Posted

Ok, so I've now taken out soy. (I need to figure out how to do it since I use soy milk and butter so regularly.)

Silk Pure Almond milk is delicious. I'm a big fan of the Dark Chocolate and Vanilla versions. Gluten, dairy, and soy free.

And Earth Balance makes a great dairy-free, soy-free "butter."

rain Contributor
rain
Posted
  • Author

Silk Pure Almond milk is delicious. I'm a big fan of the Dark Chocolate and Vanilla versions. Gluten, dairy, and soy free.

And Earth Balance makes a great dairy-free, soy-free "butter."

Thanks for the tip on Earth Balance! I've also taken out nuts so I can't drink Almond Milk, but I'm learning to like (and I mean learning!) Rice Milk.

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shopgirl Contributor
shopgirl
Posted

Thanks for the tip on Earth Balance! I've also taken out nuts so I can't drink Almond Milk, but I'm learning to like (and I mean learning!) Rice Milk.

It's not Rice Dream rice milk, right? That has hidden gluten in it.

rain Contributor
rain
Posted
  • Author

Yes it is!! oh no...

Which one should I buy?

Thanks so much for telling me.

shopgirl Contributor
shopgirl
Posted

I don't have any experience with rice milk so someone else will have to charm in but the hidden barely in Rice Dream

kate1 Newbie
kate1
Posted

I found out by accident that rice dream had possible gluten from barley when I couldnt get hold of any for over a week and bought a different one.

When it was in stock again I bought some and was not well all day and was confused, everything I had eaten was Gluten free....so I googled Rice dream and looked on here too!!!!! I have not bought it since......Try look for another make. :)

GFinDC Veteran
GFinDC
Posted

Hemp milk is another option, one brand is called Tempt. There are gluten free rice milks also, just the Dream ones are bad as far as I know.

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      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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