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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Just Cant Put On Weight! Steriods Or Weightgainers
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5 posts in this topic

I was diagnosed last year around October after being misdiagnosed for at least 5 years with IBS.

Some of my symptoms have subsided but alot are still present. I think i was probobly stage 3 or 4 upon reading other posts. I still have daily and weekly pains and symptoms and have felt that i have been really careful not to get glutenized!

I lost 50 lbs and CANNOT seem to put the weight back on!

I was 220lbs and thick and pretty fit.

Now i fluctuate between 176-180.....

I am 6'3" and look skinnier than i did when i was in my prime in high school!

Are there any "safe" weight gain powders or supplements?

OR are steroids the answer?

( i wasnt aware steroids where prescribed until reading some other posts..)

Any advice would be very appreciated!

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HI nailehead,

my husband has been put on steroids but not primarily to put on weight.

My husband has 'refractory' coeliac disease (meaning it's not getting better on a gluten free diet).

The steroids are prescribed to dampen down the immune system,by dampening down the immune response,this allows the bowel to heal(hopefully).

Of course a side effect of the steroids can be a huge appetite-helping with the weight gain.

My husband is around 120 pounds at 6ft tall ,so any weight gain would be a bonus!

However,these are extremely strong drugs,and should not be taken lightly.They can also have some nasty side effects-so I don't think you should be thinking of steroids just yet.Do you have a gastro doctor?.I would discuss your symptoms with him/her.Did you have a biopsy yet?.Maybe after a year gluten-free you should ask for a repeat biopsy to work out if your bowel is healing.

I believe my husband has had this disease for a long time undiagnosed,so I think that there is a lot of damage to undo,& will take a while(he's been gluten-free for 8 months.)

Another thing you may want to consider is other food allergies causing your symptoms i.e.lactose,casein,soy,yeast.

Do you see a dietician?.They would be able to advise on suitable gluten-free build up additives(my husband has enlive &ensure drinks packed with vitamins & calories).

I hope this is some help!

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Thanks Nikki!

I was diagnosed by my "primary care" doctor, which pretty much means an all around family physician, but at least she finally found it ( Celiac ) after 5 years and 5 other docs telling me it was IBS and to "live with it"!

I was referred to a specialist here in San Diego that i will be contacing today..hopefully and set up an appt.

I have been conversing with a nutritionis/celiac specialist over the phone, and she feels that i have a severe case of Celiac and DEF need to go see a specialist!

working on that now!

thanks for your input!

i am in pain and discomfort EVERYDAY even being on the gluten-free diet!

it is really frustrating and affecting my attitude mentally, and still my body physically...very depressing...

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First, have you made sure nothing is sneaking into your diet? Have you checked things like shampoos and stuff you put on your hands, face, or head that could possibly get into your mouth?

I lost close to 20 pounds before going gluten free but after I gained it back.

Ensure Plus (chilled) is really good to get some calories into you. They have 350 calories for 1 bottle= to 1 cup. Ensure Plus is made to help people gain weight. My favorite is the butter pecan...chilled always taste better. Ensure and Ensure Plus drinks are gluten free.

Sunflower seeds, peanuts, cashews, apples or a fruit with peanut butter. These are a few things that are good for gaining weight because they are high calorie.

You need to eat more calories then you burn. I know I have a fast metabloism on top of everything so I had to eat alot more in order to gain weight. Eat about 500 more calories then you usually eat.

Here is a link with a calorie counter...what you can do is put in your ideal weight and it will tell you how many calories you need to have to reach that goal.

http://www.cancer.org/docroot/PED/content/...sp?sitearea=PED

Here is another site for it as well...this one is a bit more in depth

http://www.dietitian.com/ibw/ibw.html

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It's hard going isn't it, to finally find out why you feel so bad-but to not feel any better with the 'cure'(gluten-free diet).

I think I also understand what you mean by all of this is affecting your 'mental attitude'.

My husband has been gravely ill with this disease,and he does get very down about it.Since diagnosis in the last 8 months he has been mostly bedridden,& it's affected us all as a family(we have 3 kids too).

It is so very frustrating when despite your best efforts you're not getting better,however,hopefully-you'll have a better idea of what's going on after seeing your specialist.

Hang in there-hope you feel better soon.

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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