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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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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
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