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Appetite Changes?
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Hi guys

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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 ;-)

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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.

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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?

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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. :)

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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

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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.

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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

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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.

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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.

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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....?

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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.

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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.

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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

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The cravings are the worst

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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.

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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.

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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.

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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.

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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.

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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.

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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. ;)

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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!). ;)

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