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8 Months In And No Improvements
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8 posts in this topic

Hey all, I was diagnosed in early August 2012 and went gluten-free immediatly after. I had Iron deficiency anaemia that won't go away which led to an endoscopy (that proved Celiac). Since then, I got an iron infusion in December (which did nothing at all, other then bumping my Iron levels back to normal). I still have anaemia symptoms and overall i'm standing exactly where i was 8 months ago as far as symptoms go.

 

I have an appointment with my Doctor next week and will see what he has to say about this. I am careful with my gluten-free diet. I'm 18 years old so I was looking for a quicker recovery then most but have been very disappointed so far. Would love to get some of your oponions on this. Thanks guys!

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It can take up to two years for any damage to heal.

 

Consider keeping a food dairy. It can help you figure out what might be bothering you. It could very well be that you have an additional intolerance to something (such as corn, soy, and lactose).

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I'm still healing, gluten-free since jun 2012. I had a biopsy done in Feb, and although I haven't had an appointment yet about it, the doctor wrote on my sheet that the villi were healing. I still have many symptoms too.

If you've had celiac disease since childhood, then that's still many years to heal up, could be a decade or longer. I'm only 30 and I suspect I developed celiac disease only when I was 17 or 18, so not the 30+ years that many people here have had deal with. And of course the longer it takes to heal, the longer it will take to get your nutrients up. If you are still having gastro symptoms, another food issue seems likely. eg: I can't imagine anyone having any sort of serious gut damage and not having an issue with lactose. Since you still have symptoms of anemia, ask to get your B vitamins checked too. Read up about all the nutrients necessary for you body to function and see if any one of those deficiencies in particular describes you, then ask if you can get tested for it. Anemia isn't always caused by low iron.

 

Also I hope you'll be getting a follow-up biopsy to see how everything's healing.

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I agree with Cavernio about suspecting lactose.  In my experience, doctors won't give much advice to anything remotely controversial such as diets or supplements to help with recovery.  They will simply say to eat gluten free and take a lactaid supplement if you have trouble with lactose.  My GI doctor originally told me that celiac disease was still controversial and wanted to just diagnose me with the all encompassing term IBS...

 

Anyways, if I were you, I would try to bring my diet down to the basics to a point where I could feel comfortable and than slowly add food back to find out what bothers me.  Example: fruits, vegetables, meats, cashews.  I would also take a digestive enzyme before each meal (i use digest platinum by Now Foods).  Hopefully that can get you to a starting point and than you can add on from there with maybe white rice, lactose free milk/yogurt, etc..

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My GI doctor originally told me that celiac disease was still controversial and wanted to just diagnose me with the all encompassing term IBS...

Oh, yeah.

Celiac disease is controversial--my ass. Well, maybe the wheat industry and other interest groups want it to be. There is no offer of a better explanation of villous atrophy while eating wheat, that heals on a gluten-free diet.

All encompassing IBS. Doh. It is Bull Shit. Or maybe, the doc thinks, I've Been Stumped.

Done grouching for now. :wacko:

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There is a Fasano study published in a peer reviewed journal with where celiacs still experiencing symptoms on a normal gluten free diet were treated with a gluten contamination elimination diet of whole unprocessed foods: http://www.biomedcentral.com/1471-230X/13/40/abstract

 

That is what I did to eliminate my symptoms and those of my son.

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Hey all, I was diagnosed in early August 2012 and went gluten-free immediatly after. I had Iron deficiency anaemia that won't go away which led to an endoscopy (that proved Celiac). Since then, I got an iron infusion in December (which did nothing at all, other then bumping my Iron levels back to normal). I still have anaemia symptoms and overall i'm standing exactly where i was 8 months ago as far as symptoms go.

 

I have an appointment with my Doctor next week and will see what he has to say about this. I am careful with my gluten-free diet. I'm 18 years old so I was looking for a quicker recovery then most but have been very disappointed so far. Would love to get some of your oponions on this. Thanks guys!

Like you, I was diagnosed via endoscopy just two weeks ago.  Symptoms?  Only iron deficiency anemia (low ferritin),  Hashimoto's Thyroiditis and Alpha Thalassemia which is another anemia that's genetic (tiny red blood cells).  So, even as my iron levels improve by adhering to the gluten-free diet, my hemoglobin will always remain low and additional iron won't help.    You haven't mentioned all your symptoms, but another anemia might be present.  I agree with some of the others who mentioned other food intolerances too.  

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You may have to go "more" gluten free to the point of being considered eccentric by a conventional medical professional who hasn't experienced this, but it beats being sick all the time.

 

In the beginning I was grain free and low starch for a long time.  And I'm still lower carb than a "normal."  I am not "normal." I am me, damaged by living for most of my life on the wrong diet.  I added in a little bit of grains to be able to do them if I had to, but I'm better off without most of them, even if they are technically gluten free.  And cosmetics, lotions, shampoos, makeup with gluten ?  Fuggedaboutit.   Really, my allergic pets taught me that cross contamination can come from the most unexpected places.  

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    • Oh, one last thing..... ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.
    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
    • I am so sorry for your suffering.  Your story drives home the point that having Celiac Disease drives us all to do our own research and try to find a doc to help--if we are lucky. I wish you a speedy recovery and my most earnest wish that you are NEVER cross-contaminated again! You are a real trooper (little comfort, I know).  Wish I could do more.
    • Tell us how it acts please. Just looking at pictures doesn't give much info. It could be, it could not be. The best way to find out is if you're eating a gluten diet to go to a derm & INSIST, INSIST on getting a dh biopsy. Make sure they do it right. Read a couple of threads here & you'll find links to info. that tells exactly how it's to be done and it's NOT ON a lesion so make sure they don't pull that little number on you. They work for YOU, not the other way around. Make them prove it isn't dh by doing a biopsy the correct way. Do NOT take any oral steroids or get steroid shots within 2 months prior. You're going to have to be extremely firm with them but don't let them deter you from the course. Challenge them to prove what it isn't because they can't prove it's contact dermatitis.
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