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Newly Diagnosed, Malnourished, Weight Loss, Anyone Else? When Does It Get Better?
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Hello, I was just diagnosed 1 week ago. Leading up to it I was losing weight and having diarrhea every day for 8 weeks. I was put on cholestyramine powder in order to be able to hold food in. After 4 hospitals, 13 doctors, and 2 GI doctors, the 2nd one finally did the colon/endoscopy and confirmed celiac disease. I am 1 week into the diet but still can't come off the cholestyramine powder. When I try, I end up having multiple bowel movements each day. My joints hurt, muscles ache badly, eyes are dry, and my scalp itches. Can anyone give me any insight as to when I should feel better and my small intestines will start breaking down food on its own again? I still have to have the capsule endoscopy on January 3rd to see how much damage was done. Leading up to this I was a weightlifter, I lost 12 lbs of muscle and am so weak. I can't even go back into the gym yet. I would really appreciate it if anyone can give me insight. I feel so lost, I never had stomach issues prior to when this happened 3 months ago. And I actually started to lose weight 1 month prior to when the diarrhea started. I would gladly give more info if needed....any help is appreciated

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Welcome to the forum. Sorry that you are feeling so bad. Everyone is different, but it took me about six weeks to see some improvement.

Take a look at the forum's newbie tips via this link.

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

I am cyclist and am back on my bike and others here are weight lifters too. So there is hope! Hang in there.

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Hi,  Welcome to the forum! :)

 

http://en.wikipedia.org/wiki/Cholestyramine

 

Ave you verified the cholestyramine is gluten-free?   That's right, even medicines and vitamins need to be gluten-free.  You would think you could trust a doctor to verify that for you but that would be wishful thinking.  You'll need to develop and awareness of whats in your food, meds, drinks etc if you want to stay  gluten-free and recover.  Anything that you ingest has to be gluten-free.  Gluten is anything with wheat, rye, barley proteins in it.  Some 10% of celiacs also react to oat proteins.

 

As you can imagine, the immune system is very sensitive to even tiny things, like gluten proteins and germs etc.  That's why celiac disease requires strict avoidance of even miniscule amounts of gluten.  The auto-immune process starts fast and then tapers off slowly, in case there are more germs around.  So reactions can last for weeks to months in some cases.

 

You will find it simpler if you avoid processed foods and stick to whole foods.  You don't have to spend time reading and analyzing ingredients on whole foods like you do on processed foods.  Plus whole foods are better for you.

 

So you need to work on getting all the gluten out of your diet, and that includes cc (cross-contamination).  CC happens when we share a toaster with gluten bread eater, or share a stick of butter or a jar of peanut butter.   Or cook in a scratched non-stick pan with gluten molecules stuck in the scratches.  There are lots of ways for cc to get us.

 

It may be several months before things get better.  Or it may happen in weeks too.  We are all unique in our situation.

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Just wanted to add that it is not uncommon for symptoms to start suddenly.  You're actually lucky that they diagnosed it so quickly - although, I know you're not feeling so lucky at the moment.  Once you cut out all gluten - and you have to go 100% gluten-free - no cheating - you'll start to feel better and your gut will start to heal.  But it takes time.  Try a good probiotic to help restore the good bacteria in your gut - which will be especially important if they gave you any antibiotics while you were in the hospital - but even if they didn't, they'll really help the recovery.  Also look into a good digestive enzyme to help you break down your food.

 

As for the working out... I'd skip that for at least the first couple of months.  I know it's hard.  But you need time to heal and your body can't be expending energy and calories and nutrients trying to build muscle and still have enough to heal your innards.

 

Good luck and Welcome!

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I checked it out earlier, apparently it has been used in studies to treat the diar. of celiac, and is gluten free....

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Thanks for all the replies. I have been very good with removing all gluten. I was on a whole food diet for 3 years and actually didn't eat gluten except for a chest meal on Saturday. So I have a good understanding as to avoiding all gluten. All my cabinets and medicines have been checked. I'm just trying to understand when some of these strange symptoms will go away. It seems so crazy to me that all these symptoms could come from gluten!!! Lol. I was losing weight every day before I was diagnosed and I have managed to gain a lb in the week being gluten free. So I do see something is working. I just wish my small intestines would start breaking down nutrients again. I'm taking a greens drink, all vitamins that I could be lacking and a gluten free protein powder. I'm really just wondering if anyone had a similar situation to mine where they got chronic diarrhea due to no villi at all, and how they recovered. My barium X-ray study should have lasted 2-3 hours...and the barium went thru me in 10m. After the first X-ray I was done. I'm not absorbing anything.

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I do 20 squats, 25 sit ups and 20 push-ups for exercise.  These are considered Functional exercise.  I also do exercises that my chiropractor recommends.  .  I worked up to this slowly after I first was diagnosed.  I really think this has helped me recover rather than hindered it.  At first, I refused to do one sit up.  I was afraid I would rip.   One day I felt I could do a sit up, so I did.    Are you taking Digestive enzymes to help break down your food until you heal a bit?  Dietary fat helps give me energy; it may be hard for one with damage to absorb, so don't be shy on olive oil, coconut oil, or butter if tolerated.  Protein foods are also vital for healing.  I cook my vegetables as I believe it is easier to digest.  These things have helped me come out of 30 years of fog.

 

I hope all of the same for you,

 

D

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Hello, I was just diagnosed 1 week ago. Leading up to it I was losing weight and having diarrhea every day for 8 weeks. I was put on cholestyramine powder in order to be able to hold food in. After 4 hospitals, 13 doctors, and 2 GI doctors, the 2nd one finally did the colon/endoscopy and confirmed celiac disease. I am 1 week into the diet but still can't come off the cholestyramine powder. When I try, I end up having multiple bowel movements each day. My joints hurt, muscles ache badly, eyes are dry, and my scalp itches. Can anyone give me any insight as to when I should feel better and my small intestines will start breaking down food on its own again? I still have to have the capsule endoscopy on January 3rd to see how much damage was done. Leading up to this I was a weightlifter, I lost 12 lbs of muscle and am so weak. I can't even go back into the gym yet. I would really appreciate it if anyone can give me insight. I feel so lost, I never had stomach issues prior to when this happened 3 months ago. And I actually started to lose weight 1 month prior to when the diarrhea started. I would gladly give more info if needed....any help is appreciated

Hi Emani.......I was like you.  I was 94 pounds at diagnosis and not absorbing anything.  All the villi were gone.  It will take awhile for this to settle down so please try and be patient.  It took me 6 months before I had noticeable weight gain.  I have been gluten-free for almost 9 years and am doing fine.  I weight train in the gym with a trainer and do cardio so recovery will happen for you but it won't be overnight.

 

The to do list.....digestive enzymes are a must.  They will help break down your food until your body can do it on it's own.  I use Enzymedica's Digest Gold.  They are gluten free and work very well.  You can use whatever ones you wish as long as they are gluten free and from a good source. Probiotics are another must.  Your gut will be all out of whack, as far as good bacteria are concerned and you need to re-populate your GI tract with the friendly ones.

 

Do not do any exercise, other than walking, until you have gained some weight and are feeling stronger.  Your body needs all the nutrients it can get for healing and exercise will deplete them.  I know this will be hard for you but you really need to concentrate on rest and good nutrition first.

 

Do not go overboard on fats right away because they are hard to digest and will cause diarrhea.  Eat healthy ones but small doses at first with an enzyme. You may want to try and eat gluten-free bread because it will help with the weight gain.  I love this one:  http://canyonglutenfree.com/bakery-products/10/7-Grain.html  Good whole grain ingredients and certified gluten-free. 

 

Hang in there and be patient but do not despair. You will get better, over time, and will be able to weight lift again and build muscle.  :)

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Hi Emani.......I was like you.  I was 94 pounds at diagnosis and not absorbing anything.  All the villi were gone.  It will take awhile for this to settle down so please try and be patient.  It took me 6 months before I had noticeable weight gain.  I have been gluten-free for almost 9 years and am doing fine.  I weight train in the gym with a trainer and do cardio so recovery will happen for you but it won't be overnight.

 

The to do list.....digestive enzymes are a must.  They will help break down your food until your body can do it on it's own.  I use Enzymedica's Digest Gold.  They are gluten free and work very well.  You can use whatever ones you wish as long as they are gluten free and from a good source. Probiotics are another must.  Your gut will be all out of whack, as far as good bacteria are concerned and you need to re-populate your GI tract with the friendly ones.

 

Do not do any exercise, other than walking, until you have gained some weight and are feeling stronger.  Your body needs all the nutrients it can get for healing and exercise will deplete them.  I know this will be hard for you but you really need to concentrate on rest and good nutrition first.

 

Do not go overboard on fats right away because they are hard to digest and will cause diarrhea.  Eat healthy ones but small doses at first with an enzyme. You may want to try and eat gluten-free bread because it will help with the weight gain.  I love this one:  http://canyonglutenfree.com/bakery-products/10/7-Grain.html  Good whole grain ingredients and certified gluten-free. 

 

Hang in there and be patient but do not despair. You will get better, over time, and will be able to weight lift again and build muscle.  :)

Gemini, thanks so much, I am gonna head tomorrow to get the digestive enzymes. Are these ok even though I am already having loose bowels. I tried to come off of the cholestyramine, but I only last 2 days and then I have diarrhea again. And how do I take these. Is it before each meal? Or with the meal? I am so frustrated, I am nothing like myself. In 3 months it's like I went from super healthy to severely malnourished!, my scalp itches, my skin is dry and itchy, my eyes, my joints, my muscle is gov, just everything changed! I feel like I will never be the same person again....and of course no one around me really understands that celiac can cause any of these symptoms.

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Gemini, thanks so much, I am gonna head tomorrow to get the digestive enzymes. Are these ok even though I am already having loose bowels. I tried to come off of the cholestyramine, but I only last 2 days and then I have diarrhea again. And how do I take these. Is it before each meal? Or with the meal? I am so frustrated, I am nothing like myself. In 3 months it's like I went from super healthy to severely malnourished!, my scalp itches, my skin is dry and itchy, my eyes, my joints, my muscle is gov, just everything changed! I feel like I will never be the same person again....and of course no one around me really understands that celiac can cause any of these symptoms.

I am 8 months past diagnois.  Had everything you talk about.  I am still struggling to gain weight even now.  Clarifying shampoo will help your hair.  I did Suave clarifying shampoo...nice n cheap too.  Arm and Hammer makes a Parabem and aluminum free deodorant.  Most of the upper end Olay products are great on the skin.  If you figure out how to get the muscle back let me know :(

 

If you are like most of us, just knowing what it is helps so much.  It will get better :)

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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