Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newly Diagnosed, Malnourished, Weight Loss, Anyone Else? When Does It Get Better?

Emani1030

Recommended Posts

Emani1030 Newbie
Emani1030
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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.

https://www.celiac.com/forums/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.

GFinDC Veteran
GFinDC
Posted

Hi,  Welcome to the forum! :)

 

Open Original Shared Link

 

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.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

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!

frieze Community Regular
frieze
Posted

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

Emani1030 Newbie
Emani1030
Posted
  • Author

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.

1desperateladysaved Proficient
1desperateladysaved
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

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:  Open Original Shared Link  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.  :)

Emani1030 Newbie
Emani1030
Posted
  • Author

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:  Open Original Shared Link  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.

  • 1 month later...
jam7515 Newbie
jam7515
Posted

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 :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,354
    • Most Online (within 30 mins)
      7,748
    Gracieruizzz
    Newest Member
    Gracieruizzz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.  
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.