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Another Thread About Refractory Sprue

CNV2855

By CNV2855
in Coping with Celiac Disease

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CNV2855 Contributor
CNV2855
Posted

Nobody likes posts like these but I've been crying all morning, enough is enough and I need help. There just aren't any physicians in my area that are capable, or knowledgable, enough to treat my case; my rheumatologist didn't even know that Celiac disease was a systemic immune reaction.

I got glutened a few days ago by taking a supplement that said, "free of wheat, dairy, eggs, fish, etc." but made no mention of being gluten free. Being in the hurry that I was, I bought it... and have started to feel really bad. I tested everything and this particular supplement tested positive on both tests.

I'm very sensitive, probably a side effect of having the disease for so long. I wake up most mornings with tingling at the base of my neck, systemic dryness (hair, skin, mouth, nasal). The thing is that I'm symptomatic even when I'm not glutened, it's just at a much lower level. Is this indicative of refractory sprue?

At this point, I would bet the farm that I have small fiber neuropathy. It started about eight years ago and the symptoms read off the list perfectly. Tingling? Check. Numbness? Check.

Sicca Dryness? Check. Loss of Balance? Check. Weakness? Check.

Muscle pains? Check. Twitching? Check.

My GI symptoms have finally normalized after years on the gluten free diet, after I removed corn... but I still feel that I'm on thin ice.

I don't feel like I have a handle on it anymore, not that I ever did. I don't know how I would do if I were truly gluten free, because I'm so sensitive that I can barely go a few days without something sneaking in - and it doesn't take much for everything to flare up.

I need to see a specialist because there aren't any doctors of value around here. With the nerve involvement, I need to get a handle on things quick. Houston and New Orleans are the two major metropolitan areas within driving distance, but I wouldn't mind traveling to Maryland to see someone at the Center for Celiac Research. Would I need a referral for them?

Do any of you guys have refractory sprue? I need someone to talk to.

Part of me still feels that I can heal myself up without medications, especially now that I found corn was a problem recently...but I also feel that I've given myself more than ample time, over three years on the GFD, and I'm still symptomatic.

Unfortunately, my memory is one of the first things to go when I get glutened. I...used to be intelligent, now I feel like I've taken a stupid pill literally with all this brain fog. It's really prevented me from conveying the information that I needed to, to doctors. I know I do a lot of whining but nobody I know really understands what I'm going through... :(

I'm sure there are doctors that specialize in refractory sprue and bad celiac cases like mine; I desperately need to find one.

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nora-n Rookie
nora-n
Posted

no, it just looks like you also have ttg-6 antibodies (because of neurological symptoms) too and allergy to corn and maybe other food intolerances. Or Lyme disease, or something else. What do the alternative practitioners say? They can be spot on.

There are also some gluten sensitivity forums where those who are very sensitive and have neuro issues from gluten, hang out.

glutenfreeandbeyond

braintalk , gluten sensitivity

neurotalk, gluten sensitivity

have you tried to google gluten ataxia?

YoloGx Rookie
YoloGx
Posted

Don't give up. I know its hard sometimes, but honestly I doubt you have refractory sprue. Like you said you are sensitive. Taking those supplements that did not say gluten free was a bit like Russian Roulette, eh? And now you suffer. As I would, as would many here. Some even have to figure out where their food is grown in order to avoid cross contamination with gluten... And some even get problems just touching gluten, i.e, through their skin. I doubt you have that degree of difficulty, however it might be worth thinking about and start really observing what you touch esp. before putting your hands to your mouth or face to scratch an itch or take a drink of water...

For myself I discovered roughly a year ago that I also have salicylate sensitivity. Both celiac and sals create leaky gut syndrome, a double whammy with lots of symptoms like what you describe, esp. the neuro ones. Might be worth looking into? There are food lists online plus a forum.

Given all this even I slowly heal at age 62. Besides being on a complete gluten-free diet wherein I make my own food from scratch, I also take nattokinase to speed up the healing of the villi (on an empty stomach). Natto is proven effective as excellent fibronylitic agent--i.e., it acts against scar tissue. The name of the game. There are other such agents out there too if you don't like nattokinase. Its made from fermented soy beans innoculated with the spores from straw. The ancient Japanese warriors figured it out and now smelly old natto is a traditional conditment in Japan. Nattokinase is a lot easier to take. If it agrees with you I suggest you buy it online since its a lot cheaper than in a store.

I also take probiotics, pancreatic digestive enzymes, co-enzyme B vitamins --also on an empty stomach (I don't utilize the non co-enzyme B's very well at all). Taking some plain cod liver oil now and then is also very helpful.

I take E-zorb (a far more absorbable variety of calcium than the norm) as well as a variety of minerals (liquid trace minerals, silica drops, magnesium citrate, MSM, zinc) with food.

Plus homeopathic cell salts and sulpher fifteen minutes a way from putting anything else in my mouth. Homeopathics can really help us sensitives in any case as long as you avoid caffeine and mint products.

I also now take regular epsom salt baths to detox and absorb more of the sulpher I need. You might need this, or discover you need something different.

I don't know if all of the above info will help you, however I think much of it could.

Developing a more positive attitude can do wonders. A daily walk helps against most depression. Try it, it works!

If you don't have sals, then keeping some charcoal capsules around in case you get glutened is a good idea. For me I have to burn some rice! Since I need to avoid all coconut. I eat the burnt rice with a bit of maple syrup and non sals oil (sunflower or safflower)... The carbon helps absorb the gluten and carry it out of the old system so to speak. Its not a good idea to take all the time since it also absorbs your much needed vitamins etc.

I then also take a homeopathic headache remedy for the inevitable migraine I would otherwise have from the stray glutening.

Again I can't stress the importance of washing my hands before putting anything to my face anymore. New habits?? This includes everything... Where have your hands been?? Think before eating or touching your lips. I was getting glutened every week at least once if not more. Now its rapidly becoming more rare and of less duration.

Hope you feel better soon!

Bea

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I'm very sensitive, probably a side effect of having the disease for so long. I wake up most mornings with tingling at the base of my neck, systemic dryness (hair, skin, mouth, nasal). The thing is that I'm symptomatic even when I'm not glutened, it's just at a much lower level. Is this indicative of refractory sprue?

At this point, I would bet the farm that I have small fiber neuropathy. It started about eight years ago and the symptoms read off the list perfectly. Tingling? Check. Numbness? Check.

Sicca Dryness? Check. Loss of Balance? Check. Weakness? Check.

Muscle pains? Check. Twitching? Check.

My GI symptoms have finally normalized after years on the gluten free diet, after I removed corn... but I still feel that I'm on thin ice.

I don't feel like I have a handle on it anymore, not that I ever did. I don't know how I would do if I were truly gluten free, because I'm so sensitive that I can barely go a few days without something sneaking in - and it doesn't take much for everything to flare up.

Have you looked into Sjogren's? With these symptoms persisting while gluten free I would suspect an additional auto-immune disease.

ETA: Sorry I just saw your other thread that says you do have sjogren's. Ignore the above question but it's still a good idea to look into the possibility of your sjogren's or another auto-immune disease causing some of your symptoms.

Also, what exactly do you mean when you say somehting is sneaking in every few days? Are you really getting acidental gluten every few days or does it just seem that way because of your symtpoms not going away completely? If you are really getting gluten every few days then it's time to re-evaluate your life style and get more strict (take the house gluten-free if you have not, stop eating out, drop most processed food etc.)

If you have already gone as strict as you possibly can and are not sure if that "something sneaking in" is gluten or another intolerance than it may be time to do an elimination diet to try to pin down other food intolerances.

I know that's not what you wanted to hear, but I would look at these things (additional auto-immune diseases, additional food intolerances and cross contamination) before worrying about it being refractory.

Jestgar Rising Star
Jestgar
Posted

I got glutened a few days ago by taking a supplement that said, "free of wheat, dairy, eggs, fish, etc." but made no mention of being gluten free. Being in the hurry that I was, I bought it... and have started to feel really bad. I tested everything and this particular supplement tested positive on both tests.

symptomatic even when I'm not glutened, it's just at a much lower level. Is this indicative of refractory sprue?

You need to stop eating gluten before you can start wondering about refractory Celiac. If, after being scrupulously gluten-free, you still have intestinal damage, then a doc will consider refractory. If you just aren't careful enough, well, you're in the same boat with the rest of us if we slip up.

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