Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.

Appetite Changes?
0

27 posts in this topic

Hi guys

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi guys –

I'm still getting over being glutened while on vacation and then cc'd by 2 dogs I was pet-sitting for last week. One huge thing I noticed after going gluten-free was my appetite! Things finally seemed to satisfy my insatiable hunger... which was fantastic. Well, it came back and I feel just ravenous; I'm hungry now, but I ate part of an apple 15 min ago and a very decent sized dinner 3 hrs ago. I know it will probably take some time to regulate again (it didn't immediately resolve after going gluten-free)... but it's frustrating/confusing: do I follow the signals my body is giving me or no?? Anybody else get this after being glutened?? Have you found anything that helps?

Thank you,

~Laura

Hi Aerial! I'm sorry I don't have a definitive answer for you, but I'm in the same boat. I've been gluten free for four months or so and I'm still always hungry and overeating. If I dare do some speculation of my own, I would guess that this doesn't only have to do with gluten and healing.. It might have to do with our body's previous programming and what we made it used to getting.. which were foods we're not allowed to touch anymore. Deprivation could be causing a mental reaction.. so the body might think it's being starved, and as a result urges us to eat more of what we're eating now. Maybe this is a simple case of mental rebelling due to deprivation, or maybe it's just the glutenation's side effect. I don't really know ;-)

1

Share this post


Link to post
Share on other sites

Ive been gluten free since March, and where I hardly used to eat at all, now I eat constantly! I just can't stop. Gaining weight like crazy which I can afford a bit but not as fast as Im putting it on. Last night had a huge dinner of gluten-free chilli and then before I went to bed, two more bowls. Bad, but I was sooooooo hungry!!!!! I hope this stops soon too.

0

Share this post


Link to post
Share on other sites

I have bouts where I'm full but minutes later I'm starving... I find it is from being hypo thyroid. And others find it is from blood sugar levels...Have you checked those two things?

0

Share this post


Link to post
Share on other sites

I can offer a few thoughts(FWIW) :)

Mamaw is right about hypothyroidism and blood sugar spikes and dips. If it is not your thyroid, it could just be you need to eat a balanced amount of proteins/carbs throughout the day. Eat MORE protein & less carbs in small amounts and if you do have a carb,(ex. crackers) make sure you eat protein(ex. nut butter or cheese) WITH IT. No carbs "alone".

Your body was starved from lack of nutrients due to malabsorption.

You are absorbing food now.

It wants fuel, so your appetite increases.

I gained nearly 30 lbs. since DX. :rolleyes:

I could afford some of the weight gain as I was pretty emaciated; the rest is just me enjoying food again after 3 years of never being able to keep any in. :blink:

Now, I have to watch it or I'll be too chubby. :lol:

It all balances out in time.

It's also carb-craving (post- glutening) and you need to focus more on fruits veggies, and lean protein.

You're going to balance out again. :)

0

Share this post


Link to post
Share on other sites




You're right; I used to be able to eat and eat and eat without gaining... eventually it would catch up but it would take close to 3000 calories a day for 2 months... and believe me I am not the tallest person in the world. :lol:

That's exactly it: carb craving! I've always had issues balancing my carb intake with protein, so that makes sense.

My TSH and Free T4 were normal so I don't think it's my thyroid.. I haven't paid much attention to my blood sugar though, except that I do have some symptoms of hypoglycemia.

I've always found that (pre-gluten-free) it didn't matter how MUCH I ate because I would always end up being hungry an hour later..

Thanks for the suggestions and empathy guys. I've got my fingers crossed for all of us and our insatiable appetites. :P

0

Share this post


Link to post
Share on other sites

Something to try if you eat and eat and still struggle to feel satiated is a bit (half a low gci bar, 1 serving or less of semi sweet chips) of glucose.

If I am swinging hypoglycemic, I can eat veggies, meats, nuts all day and still not be "right". If I eat just a touch of glucose it stops the hungries and stomach growling and empty feeling and anxiety and shakes.

2

Share this post


Link to post
Share on other sites

Thanks prickly! I hadn't quite put it all together, but after considering the foods that seem to satisfy me, it makes total sense. Things like KIND bars.. Sometimes it feels like I could fit an entire cow in there... :blink:

The cravings are the worst

0

Share this post


Link to post
Share on other sites

Last week I did a 7 day gluten challenge and w/in 2 days I was ravenous. I'd wake up nauseated because I was so hungry. I had forgotten how hungry I was on gluten. It took 3 or 4 days of being gluten-free again to get that feeling to go away.

0

Share this post


Link to post
Share on other sites

I found I had to come up with food combinations that were especially filling. Like baked chicken thighs with sweet potato and green beans. It's the sweet potato that does it. When I first went gluten free, I was so tired and hungry that I ate rice pasta with meat sauce twice a day for three months. Potatos are very filling. You might try researching resistant starches, they take longer to digest so keep your tummy full longer.

0

Share this post


Link to post
Share on other sites

Thank you for the suggestions! I think it's got to be part of the carb craving and my blood sugar because having a small amount of semi sweet chips last night really helped make things "right." It seems to stabilize for awhile and then swing low again. I wonder if this could have anything to do with hormones? About a month after I went gluten-free I got this distinct "feeling" that I didn't need or want to take the BCP's anymore. I haven't been in to see my doctor yet so I haven't gone off of them. Just a guess....?

0

Share this post


Link to post
Share on other sites

BCP's?

0

Share this post


Link to post
Share on other sites

Hormones can definitely affect food cravings :).

I assume bcp = birth control pills?

This is long and complicated, but I'll try to be brief.

Celiac isn't a stand-alone disease. It comes with lots of stuff and is just a piece of the puzzle. Your body is complex. Going gluten-free probably helps resolve lots of issues, but you still have other things going on and a glutening can start a chain reaction.

Lots of people here have common symptoms that are similar to yours. I have them. My ND is trying to fix my low hormones (progesterone and a bit of estrogen), cortisol, DHA....my thyroid is whacked and it will only recover as well as my adrenals allow it. Adrenals are not working correctly - havent for years. Damage from steroids (recent), and Celiac can be assumed, as well as years of Hashimotos (and that is assumed to be caused by Celiac). My liver is not optimal - Celiac and two tons of meds used to treat DH have probably taken a toll.

A suspected glutening in December set off an ai event/cascade in me that I'm just now getting over.

So, this whole gluten thing is complicated. It's that simple and that messy.

Yes, the glutening triggered something. It may go away again, then come back. It may be a symptom (the way your body copes with gluten) of a bigger issue or it may just take time for your body to deal with the gluten.

Personally, I think of going gluten-free like setting the reset button. And every glutening is like a mini reset.

If I hit a hypoglycemia "period" it is always preceded by a "hyper" period. I must be super-strict about eating in a schedule, and eat fiber, protein with every meal. Stage 1 is the event (binge or perhaps the glutening), stage 2 is hyper, stage 3 is hypo. Each stage lasts a week or more.

1

Share this post


Link to post
Share on other sites

Celiac isn't a stand-alone disease. It comes with lots of stuff and is just a piece of the puzzle. Your body is complex. Going gluten-free probably helps resolve lots of issues, but you still have other things going on and a glutening can start a chain reaction.

So, this whole gluten thing is complicated. It's that simple and that messy.

Personally, I think of going gluten-free like setting the reset button. And every glutening is like a mini reset.

True, true, and very true. Your body is trying to "re-boot" itself.

It is my understanding that a glutening causes an inflammatory response that can take up to 3 months to resolve. (and from my experience, it seems longer <_< )

People who say "a little bit won't hurt" have no freakin idea what they are taking about.

1

Share this post


Link to post
Share on other sites

Yes, I was referring to birth control pills. :)

I know that gluten is a huge part of the puzzle, but not the whole thing. It's like peeling an onion, or playing jenga (if you've played it). However, I never Really realized it. It may sound incredibly stupid, but I never quite internalized that the problem I was trying to solve was myself. :blink: Understanding that is both overwhelming and satisfying.

Sometimes it's just hard to know where to go first.

Thank you so much. :)

~Laura

0

Share this post


Link to post
Share on other sites

The cravings are the worst

0

Share this post


Link to post
Share on other sites

Yes, I was referring to birth control pills. :)

I know that gluten is a huge part of the puzzle, but not the whole thing. It's like peeling an onion, or playing jenga (if you've played it). However, I never Really realized it. It may sound incredibly stupid, but I never quite internalized that the problem I was trying to solve was myself. :blink: Understanding that is both overwhelming and satisfying.

Sometimes it's just hard to know where to go first.

Thank you so much. :)

~Laura

I think the difference is treating Celiac like an autoimmune disease vs. a digestion issue/stand-alone issue.

I ignored the fact I was ai for years. It was evidently the wrong thing to do.

0

Share this post


Link to post
Share on other sites

I think the difference is treating Celiac like an autoimmune disease vs. a digestion issue/stand-alone issue.

I ignored the fact I was ai for years. It was evidently the wrong thing to do.

Very true. There's a lot to learn about them, too.

0

Share this post


Link to post
Share on other sites

I think most people fail to think of celiac disease as being a serious life-threatening autoimmune disease.

Most view it as "gastro problems". <_<

Clearly, this is a mistake.

0

Share this post


Link to post
Share on other sites

I think most people fail to think of celiac disease as being a serious life-threatening autoimmune disease.

Most view it as "gastro problems". <_<

Clearly, this is a mistake.

I understand that Celiac is part of a serious autoimmune condition, but what do I do beyond trying to effectively manage the "gastro" aspect of it? What am I missing by doing that alone? A little confused by that point.

0

Share this post


Link to post
Share on other sites

I understand that Celiac is part of a serious autoimmune condition, but what do I do beyond trying to effectively manage the "gastro" aspect of it? What am I missing by doing that alone? A little confused by that point.

Very good question.

I've been looking for information on inflammation and other ai diseases....funny enough I don't find it about Celiac but about RA, Lupus, Sjogren's, even MS.

I don't really have good reading suggestions yet, I'm just getting started.

Hopefully others will chime in.

0

Share this post


Link to post
Share on other sites

I think the only thing you can do is take one step at a time, but realize that celiac is an ai disease and could potentially give you more ai diseases. As pricklypear1971 was saying, it's not a stand alone disease, but rather, when one thing goes wrong another becomes much more likely to occur. It works like genetic mutations: Trisomy 21, aside from causing Down-Syndrome, increases the likelihood of different kinds of cancers (most commonly, leukemia) but it also can cause issues with support in the C1 & C2 vertebrae. That's my very rudimentary understanding/guess. :rolleyes:

I don't know about prevention, though... wish I had more information.

0

Share this post


Link to post
Share on other sites

I understand that Celiac is part of a serious autoimmune condition, but what do I do beyond trying to effectively manage the "gastro" aspect of it? What am I missing by doing that alone? A little confused by that point.

You aren't missing anything. ;) You are doing the best thing you can do for your body by being strictly gluten free.

Most AI diseases have no known cause and no cure, only treatments. At least we KNOW what sparks the autoimmune attack in celiac disease, (gluten) and we know the treatment and we can put the disease process into remission.

Many Celiacs tend to have more than one AI disease because their underlying disease (celiac disease) was unDxed for so long. Long term inflammation is the likely culprit.

Since controlling the gut issues (by adhering to a strict gluten-free diet) essentially manages the gastrontestinal problems, the body will begin to absorb nutrients once more, stop the autoimmune attack and hopefully, prevent wide-spread inflammation in the body.

This is why UNTREATED celiac is dangerous.

All AI diseases share a common trait--the immune system mistakenly attacks and destroys healthy body tissue.

According to the NIH (National Institutes of Health), there are more than 80 different types of autoimmune disorders.

"Normally the immune system's white blood cells help protect the body from harmful substances, called antigens. Examples of antigens include bacteria, viruses, toxins, cancer cells, and blood or tissues from another person or species. The immune system produces antibodies that destroy these harmful substances.

In patients with an autoimmune disorder, the immune system can't tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues. This response is a hypersensitivity reaction similar to the response in allergic conditions.

In allergies, the immune system reacts to an outside substance that it normally would ignore. With autoimmune disorders, the immune system reacts to normal body tissues that it would normally ignore.

What causes the immune system to no longer tell the difference between healthy body tissues and antigens is unknown. One theory is that some microorganisms (such as bacteria or viruses) or drugs may trigger some of these changes, especially in people who have genes that make them more likely to get autoimmune disorders.

An autoimmune disorder may result in:

The destruction of one or more types of body tissue

Abnormal growth of an organ

Changes in organ function

An autoimmune disorder may affect one or more organ or tissue types. Organs and tissues commonly affected by autoimmune disorders include:

Blood vessels

Connective tissues

Endocrine glands such as the thyroid or pancreas

Joints

Muscles

Red blood cells

Skin

This is particularly important to those of us with celiac, because so many of us had multi-system disorders result from it. There is not one part of me on that list that was not affected by celiac disease.

A person may have more than one autoimmune disorder at the same time. Examples of autoimmune (or autoimmune-related) disorders include:

Addison's disease

Celiac disease

Dermatomyositis

Graves disease

Hashimoto's thyroiditis

Multiple sclerosis

Myasthenia gravis

Pernicious anemia

Reactive arthritis

Rheumatoid arthritis

Sjogren syndrome

Systemic lupus erythematosus

Type I diabetes

See how many members report these various disorders on here--in conjunction with their celiac disease DX?!!

Symptoms

Symptoms of an autoimmune disease vary based on the disease and location of the abnormal immune response.

Symptoms that often occur with autoimmune diseases include:

Fatigue

Fever

General ill-feeling (malaise)"

For a good explanation of how the GI tract works, why it is essential to keep gluten out and what happens to the body from gluten (in celiac disease), I suggest reading Recognizing Celiac Disease by Cleo J. Libonati. Her website has the list of over 300 symptoms of celiac I often cite. She even explains in great detail how vitamin and minerals levels are affected and how they resolve.

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

The bottom line is, we may be more susceptible to developing additional various AI diseases and lymphoma, but the good news is, if we discover the celiac disease early, preventing the autoimmune attack from gluten, we can significantly reduce our risk of acquiring more AI diseases.

This why the "old guard" on here :) tells young people like Aerial to start the gluten-free diet young ---and live a long and healthy life. ;)

1

Share this post


Link to post
Share on other sites
Symptoms that often occur with autoimmune diseases include:

Fatigue

Fever

General ill-feeling (malaise)"

THANK YOU for mentioning this! Again, some things I never really realized were broadened to AI diseases.

This why the "old guard" :) on here tells young people like Aerial to start the gluten-free diet young ---and live a long and healthy life. ;)

And this is why young people like Aerial will live long and healthy lives (I hope!). ;)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,348
    • Total Posts
      917,421
  • Topics

  • Posts

    • Testing After Celiac Disease if IgA deficient
      If you have Celiac Disease, and you are IgA deficient, what do they check on your labs to make sure you are not being "glutened"?
    • Weird Reaction
      Hi again Richie, A lot of coeliacs have a problem with coffee, maybe you do too. It could explain the shakes you describe. I am sensitive to coffee, and haven't touched caffeine since last summer. (The detox lasted for 10 days and it wasn't pleasant, so if you ever give it up, do it gradually).  Sometimes when you're intolerant to something, when you have it, it makes you feel 'better' but it doesn't last and usually end up worse, it's like a drug - and in the case of caffeine it is. I also take a daily probiotic (gluten free and dairy free etc)., which is good for healing the gut.
    • Weird Reaction
      Cristiana and Flowerqueen, I haven't been officially diagnosed as Celiac but I had a DNA test in March 2015 which revealed I had the Celiac gene on both sides so it was advised that I have a test to see if I did have it. I didn't but I went off gluten immediately and haven't "knowingly" eaten it since. Before the DNA test I didn't have the nausea and trembling type feelings that I do now but I occasionally got the shortness of breath which I used to put down to being a smoker. (I quit almost 16 years ago) Anyway, this morning I woke with the nausea feeling, the trembling, loss of appetite, feeling of doom again but it happens so intermittently. I do have some unavoidable stress in my life all of a sudden so maybe it's all connected some how. But on the plus side my bowel movements have returned to normal and I go often especially after waking and having coffee. (Oh, and Cristiana don't worry about tmi with me. You would have to try pretty hard to offend me and nobody has done it yet. haha) I always think the worse to. The internet and Google are great but information overload becomes a real possibility creating some frightening scenarios. It's just interesting that the coffee with the MCT Oil (Brain Octane is the actual name) and butter makes me start feeling better and the nausea, trembling, anxiety seem to be extinguished by it but coffee with low fat milk doesn't although I do get more energy from it. I did read somewhere that MCT Oil was good for gut health though and if I had to describe it it would be like it just smooths over all the bad stuff with a nice soft lining.  It was recommended in my DNA test that I have more fats in my diet and low processed foods but I occasionally have gluten-free biscuits, gluten-free ice-cream (my true weakness) and gluten-free weet-bix. I've checked most of these items ingredients and they are pretty good. There is a lot of gluten free rubbish out there though which I completely avoid. Thanks GFinDC for your reply. I was going to speak to my Naturopath when I see her about Immune Health. My plan usually involves the Liver Tonic I mentioned above and heavy on the L-Glutamine which, apparently, is supposed to be excellent for gastrointestinal health but I'm not going to supplement with anything just yet until I get my blood work done and see if it reveals any deficiencies. I'm suspecting Iron though. Because I've had recent tests all coming back good I'm thinking a possible scenario would be a die-off effect I've heard of where all the bad bacteria have been killed off but your body can't rid itself of them quick enough so you actually feel or get worse before you get better. That's where the detox strategy comes in and I'm assuming replacing them with Good Bacteria via Probiotics. Again, this is what I have read in the past but it does seem to make sense in some cases. I do feel better in having found these forums though.  
    • Daughter with celiac- need test result help
      You are doing well.  We didn't have a "normal" tTG for 6 years and were also very strict.  Kiddo was dx with hypothyroid as well and tTG fell a lot after getting on meds for that but still didn't normalize.  Finally cam down within the last 6 months (this after a trip to THE Celiac Dr. several years ago).  I wish we had done a DGP much earlier and I had pushed for that sooner.  I would start there and see what happens.     Sounds like you're doing everything right though. Sometimes it just takes time. 
    • 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
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,484
    • Most Online
      1,763

    Newest Member
    KKJ
    Joined