Always Hungry?

[AshleyDawn91]

Hello everyone, 

I am new to this site and I feel like if I was going to ask around why not ask here.

So over the last few years I have hit a lot of medical issues and have been dealing with them one at a time as doing it all together would have ended with bad results. However its come time where I only have two more issues left as others are being dealt with and managed just fine. 

I seen a post somewhat similar to what  I am about to ask but the person posting it was cutting things out for all the wrong reasons and so my question goes un answered.

So with all that out of the way, here goes nothing... I have been diagnosed with celiac and have lactose sensitivities as well, and seeing as how both of these call for my diet to alter just a little more then it has been I decided I would try to do it all at once. I have tired in the past doing it one at a time but I didn't have the discipline to keep to it, so I have decided to try putting it together and doing it this way, However today is my first full day going without gluten and dairy products and I feel like I am never full, this morning I was not hungry had my usual small breakfast which normally doesn't include gluten or dairy so no big change there, same with lunch was not very hungry but made myself eat like always, however come 5-6:00 pm and I made dinner for my family and myself and I made sure it was gluten and dairy free and ever since then I cant stop eating , I feel like I'm binge eating and I don't know why my body is telling me I'm hungry when there is no possible way it still is.... 

So my question is... will i always feel hungry? Will this go away after a few days of a new diet? or is this something I may need to speak with my dr about? open to all opinions as I just want to see if anyone else has experienced this after making the change?

[cyclinglady]

Eat. Your body is telling you to eat for a reason.  As a newly diagnosed celiac, chances are you have vitamin and mineral deficiencies that will soon resolve with healing and provided you do not live on junk food.   Plus, when you radically change your diet, you tend to also cut back on calories.  
 

Things will even out, but it may take months.  Make sure you are eating lots of fat.  Add avocados to your salad or drench with olive oil.  Eat bacon.  And you might be able to tolerate butter and hard cheeses and the graduate to yogurt right now.  I live butter, so I add globs of it to everything.  Nuts are also good choices.  Eat fruit.  
 

Welcome to the forum!  

[GFinDC]

I think it's normal to feel hungry after going gluten-free.  Remember your body is starting to heal and that take energy,  Also your digestive system is beginning to start functioning more normally than before.  There are lots of potential changes when we go gluten-free and stop poisoning ourselves with gluten every day.

[Always-Hungry-Kate]

I know I am a little "late to party", here, but I was just diagnosed with Celiac Disease on 22-Oct-2023.  Already had an endoscopy confirming it.  No question.  After starting a gluten-free diet on 22-Oct -- when I got the lab results -- I have been feeling as if I am STARVING for a number of hours a day.  Severe hunger pangs -- especially after I wake-up, it is ridiculous!  It takes a LOT of food to make me feel satisfied . . . and then, oftentimes, it is accompanied by nausea.

Already met with a registered Dietician.  Told him what I'm eating and he said it all sounded good -- keep up the good work.   Also been to a number of doctors in the last month-and-a-half.  Very discouraging because they keep referring me to therapists and even psychiatrists to deal with my hunger and nausea, which has not been helpful.  So, I just joined this group, since I am already a member of Facebook Celiac group which HAS been very helpful for me.  It's been the most help I've gotten, since this horrible journey started. 

I just wanted to add to this thread and say, "Yep, it's been almost 2 months since I went gluten-free and I am waking up during the night starving . . . even after I've had a bowl of soup or a protein bar with milk or hot tea.  It's terrible and I am looking for any support I can get from other Celiac patients. 

 

[plumbago]

Sorry @Always-Hungry-Kate to hear this. Tell us how it goes: do you eat a lot, then feel nauseous and then you are hungry? When you are nauseous, do you ever vomit? Did you have these same issues before you went gluten-free? Do you think you are eating less now than you were before because of the restrictions? IOW, is it a matter of learning to substitute adequately, do you think? What else has changed since going gluten-free? Are you vegetarian? If so, I imagine the transition to a gluten-free diet could be tricky.

[Always-Hungry-Kate]

6 minutes ago, plumbago said:

Sorry @Always-Hungry-Kate to hear this. Tell us how it goes: do you eat a lot, then feel nauseous and then you are hungry? When you are nauseous, do you ever vomit? Did you have these same issues before you went gluten-free? Do you think you are eating less now than you were before because of the restrictions? IOW, is it a matter of learning to substitute adequately, do you think? What else has changed since going gluten-free? Are you vegetarian? If so, I imagine the transition to a gluten-free diet could be tricky.

Thank you.  No, I'm not vegetarian or anything like that.  No other restrictions, yet.  I wake up with terrible hunger pangs.  First thing:  I go to the fridge and guzzle a gluten-free smoothie drink that is mainly made of mango and/or blueberries.  Each bottle is usually over 200 calories; that is usually not enough.  So then, it's a probiotic yogurt drink (8oz?) and/or a few tablespoons of plain yogurt -- to kill the hunger, if possible.  After a few minutes, I feel a bit more "stable" until I can boil water for tea or decaf coffee, with which I have an actual banana. 

Then, the hunger quiets down, but it is not really GONE until more time goes by (25 mins or so).  By then, I try to eat some gluten-free cereal or protein bar.  That's a lot of calories for anyone and yet I still feeling hungry.  No thyroid issues or anything like that, by the way.  Just this "healing" of my gut going on, apparently.

Ugh!  It's so weird!  At least I'm sleeping through the night pretty well -- getting up to use the bathroom once, though.

[Always-Hungry-Kate]

One more question for anyone who can answer:  about how long (I know everyone is different) before you start to feel somewhat "normal" again, with NORMAL feelings of hunger, WITHOUT feeling nervous/shaky . . . WITHOUT feeling nauseous. 

(I'm actually somewhat afraid of the answers I will get here, but I do want to know.) 

[shadycharacter]

1 hour ago, Always-Hungry-Kate said:

Thank you.  No, I'm not vegetarian or anything like that.  No other restrictions, yet.  I wake up with terrible hunger pangs.  First thing:  I go to the fridge and guzzle a gluten-free smoothie drink that is mainly made of mango and/or blueberries.  Each bottle is usually over 200 calories; that is usually not enough.  So then, it's a probiotic yogurt drink (8oz?) and/or a few tablespoons of plain yogurt -- to kill the hunger, if possible.  After a few minutes, I feel a bit more "stable" until I can boil water for tea or decaf coffee, with which I have an actual banana. 

Then, the hunger quiets down, but it is not really GONE until more time goes by (25 mins or so).  By then, I try to eat some gluten-free cereal or protein bar.  That's a lot of calories for anyone and yet I still feeling hungry.  No thyroid issues or anything like that, by the way.  Just this "healing" of my gut going on, apparently.

Ugh!  It's so weird!  At least I'm sleeping through the night pretty well -- getting up to use the bathroom once, though.

Gluten is a protein, so maybe add some extra protein to compensate for the possible reduction of protein when gluten and dairy is cut out? 

[plumbago]

17 minutes ago, shadycharacter said:

Gluten is a protein, so maybe add some extra protein to compensate for the possible reduction of protein when gluten and dairy is cut out? 

Yes, that was what I was trying to get at, partially, with my questioning: what has changed in terms of what the OP is eating. I agree that maybe eating more protein could help. Also, others have pointed out that oftentimes people with celiac disease also cross-react with dairy. No idea if that's happening in this case though.

[Always-Hungry-Kate]

17 minutes ago, shadycharacter said:

Gluten is a protein, so maybe add some extra protein to compensate for the possible reduction of protein when gluten and dairy is cut out? 

Yes, I have been doing that too — with protein bars, eggs, protein drinks (which are a lot like “Boost” and “Ensure”; loaded with vitamins/minerals) — which all help, but it seems like within an hour I’m hungry again.  (Note:  there are times when I practically overindulge in [good] food; I eat so much that I sometimes feel nauseous afterward — almost like when you were a kid and ate too much candy, although I’m certainly not eating candy . . . or junk food.) 
To me, biologically, this still doesn’t make any sense to me.  But, judging by all of the information that I’m seeing here, apparently, this is “how it works”.   Now you know why I’m struggling so much.  This still doesn’t make a whole lot of sense, but I am learning. 

[trents]

Three things I would have you think about:

1. Is the hunger tied to nutritional deficiency? Are you taking any potent vitamin and mineral supplements?

2. Gluten behaves in some ways like an opiate in our bodies. When it is removed, there are often withdrawal effects.

3. Try adding more fats to your diet. All the things you mention in your post that you consume are carbi and but low in fat. Fat satisfies. That's why the ketogenic diet works so well to lose weight. Getting the right kind of fats in our diet is good. We have been misled for generations about fat causing weight gain and bein bad for us which has led to the consumption of more carbs which is really the culprit in obesity.

[plumbago]

@Always-Hungry-Kate For me, it took maybe a year or so to feel somewhat normalized in terms of my particular symptoms. In general, I did feel better going without gluten (socially, it's still not fun). For me, it was good not to have D every morning. Where I work (in healthcare) we've stopped the protein shakes as they are simply loaded with sugar. I wish you luck in your journey, hopefully more people with symptoms similar to yours can chime in.

Plumbago

[Always-Hungry-Kate]

8 minutes ago, trents said:

Three things I would have you think about:

1. Is the hunger tied to nutritional deficiency? Are you taking any potent vitamin and mineral supplements?

2. Gluten behaves in some ways like an opiate in our bodies. When it is removed, there are often withdrawal effects.

3. Try adding more fats to your diet. All the things you mention in your post that you consume are carbi and but low in fat. Fat satisfies. That's why the ketogenic diet works so well to lose weight. Getting the right kind of fats in our diet is good. We have been misled for generations about fat causing weight gain and bein bad for us which has led to the consumption of more carbs which is really the culprit in obesity.

Oh, wow.  I haven’t read that yet — i.e., the “Opiate Factor” you mentioned.  Interesting.  If it were actually a withdrawal reaction, though, wouldn’t I be experiencing headaches or body-aches?  So far, I have any feelings like that.   I’m also grateful that — since diagnosed with this — I have not been so sick that I’ve been vomiting, because that would be really horrendous for me right now.  I need every ounce of food to stay in my stomach until I fully digest it.  
I will try and see what are the kinds of fats I can add to my food, other than butter, which I use more than I ever have, now.  (I never used to use very much butter at all, but it makes the gluten-free breads and muffins taste better.) 

[trents]

Healthy fats can be found in things like nuts and seeds. Eggs too. Fats are calorie dense and are burned up as quickly as carbs. They have staying power.

https://www.glutenfreesociety.org/gluten-withdrawal/

Edited December 7, 2023 by trents

[Scott Adams]

2 hours ago, Always-Hungry-Kate said:

Yes, I have been doing that too — with protein bars, eggs, protein drinks (which are a lot like “Boost” and “Ensure”; loaded with vitamins/minerals) — which all help, but it seems like within an hour I’m hungry again.  (Note:  there are times when I practically overindulge in [good] food; I eat so much that I sometimes feel nauseous afterward — almost like when you were a kid and ate too much candy, although I’m certainly not eating candy . . . or junk food.) 
To me, biologically, this still doesn’t make any sense to me.  But, judging by all of the information that I’m seeing here, apparently, this is “how it works”.   Now you know why I’m struggling so much.  This still doesn’t make a whole lot of sense, but I am learning. 

I agree with @trents and adding more healthy fats to your diet should help with the hunger pangs. Avocados, cheeses, etc., are good options.

[Always-Hungry-Kate]

6 hours ago, Scott Adams said:

I agree with @trents and adding more healthy fats to your diet should help with the hunger pangs. Avocados, cheeses, etc., are good options.

Yes, I bought a block of Swiss Cheese today — after I attended a holiday party last night and found that the cheese and grapes were the only things offered that I could eat.  (All of the pastries, hors d’oeuvres and hot finger foods they had looked SO good, too; at least there was something for me.) 

[trents]

How about peanut butter? Some of the mainline brands are labeled gluten free. Skippy is I think. 

[Always-Hungry-Kate]

Yes, that’s been good for me, too.  You’re right:  most of the labels on them are marked “gluten-free”.  I also tried almond butter for the first time a few weeks ago.  Never had it before; it was good.

[Always-Hungry-Kate]

9 hours ago, trents said:

Healthy fats can be found in things like nuts and seeds. Eggs too. Fats are calorie dense and are burned up as quickly as carbs. They have staying power.

https://www.glutenfreesociety.org/gluten-withdrawal/

Just wanted to follow-up on the fact that I read the article you posted here and found it extremely interesting.  It gives me hope that maybe this insane hunger and anxiety will eventually go away since they are completely unfounded.  According to all of my biometric tests/screenings, assorted scans, and my recent endoscopy, there is nothing clinically “wrong” with me (so to speak).  In the next few days, I will find out the results of my vitamin/mineral blood test.  If it shows a deficiency, that will explain a lot. If it doesn’t, then I just have to wait a little bit longer for these “growing pains” to stop.

[trents]

1 minute ago, Always-Hungry-Kate said:

Just wanted to follow-up on the fact that I read the article you posted here and found it extremely interesting.  It gives me hope that maybe this insane hunger and anxiety will eventually go away since they are completely unfounded.  According to all of my biometric tests/screenings, assorted scans, and my recent endoscopy, there is nothing clinically “wrong” with me (so to speak).  In the next few days, I will find out the results of my vitamin/mineral blood test.  If it shows a deficiency, that will explain a lot. If it doesn’t, then I just have to wait a little bit longer for these “growing pains” to stop.

Common blood tests for vitamin and mineral deficiencies are not always helpful. They only measure what floating around in the blood, not what is actually being taken in by the body's cells or what is being stored. Take calcium for instance. The body will rob calcium from the bones to keep blood levels up to snuff for metabolic needs if dietary intake is insufficient. Blood levels will be normal but the person is developing osteoporosis or osteopenia. Deficiency symptoms may be a better guide. Also, "normal range" levels of vitamins and minerals may not be the same as optimum levels. For all these reasons we commonly recommend those just having been diagnosed with celiac disease after years of symptoms to use the shotgun approach and take a high potency B-complex, magnesium, zinc and D3 to cover all the bases. And how many vitamins and minerals were you tested for? Probably not many. The B-vitamins are seldom deficient in isolation so testing for one or two in the complex might not tell the whole story.

[Always-Hungry-Kate]

Ah, O.K.  Good to know.  Depending on the results, I am sure my new GCP will be in touch with me and either suggest a good multi-vitamin that will fill-in the deficiencies or . . . tell me to “keep up the good work” if the levels appear to be acceptable.   So many people were suggesting that I get one of these types of tests so, I’m just getting it over with, now.  That way I can say, “Yes, I did that”. 

[trents]

58 minutes ago, Always-Hungry-Kate said:

Ah, O.K.  Good to know.  Depending on the results, I am sure my new GCP will be in touch with me and either suggest a good multi-vitamin that will fill-in the deficiencies or . . . tell me to “keep up the good work” if the levels appear to be acceptable.   So many people were suggesting that I get one of these types of tests so, I’m just getting it over with, now.  That way I can say, “Yes, I did that”. 

Multivitamin products are not potent enough to jump start the correction of long term vitamin and mineral deficiencies we typically see in the adult celiac population, at least for those who went many years without a diagnosis. When you are in Costco or Walmart next time, compare the percentages of RMDA in the B vitamins found in a dedicated B-complex supplement to those found in an adult multivitamin. Huge difference. By the way, Costco is an excellent place to find good quality gluten-free vitamins and supplements. 

Edited December 8, 2023 by trents

[knitty kitty]

I developed vitamin and mineral deficiencies before my diagnosis.  

Thiamine deficiency made me have a voracious appetite at some times and at other times, I had no appetite at all.  Thiamine affects the satiety center in the brain that tells you to eat more or you've had enough.  

Thiamine deficiency also causes nausea.  I would wake up ravenous, but have nausea so bad I didn't want to eat.  Nausea sometimes occurred after eating.  My food just sat there and didn't seem to move.  Gastroparesis, where your food doesn't get squished through the intestines at a regular pace, can also be attributed to thiamine deficiency.   Later I developed non-stop diarrhea and gastrointestinal pain and cramping (Gastrointestinal Beriberi is caused by Thiamine deficiency).  

Thiamine deficiency causes anxiety.  My doctors threw a variety of antidepressants at me, but they didn't work and made things worse.  Many antidepressants (and other pharmaceuticals like PPIs) can inactivate thiamine so the body can't use it. 

Thiamine deficiency causes fatigue.  The fatigue I felt was awful and unrelenting.  

Thiamine deficiency affected my balance.  I waddled.  My hair started falling out by the handful.  My vision became more blurry.  I had painful migraines.  I began having ophthalmic migraines (thiamine deficiency affects the optic nerves).   I had menstrual problems.  I had cramps in my muscles.  I'd wake at night with Charlie horses.  I felt faint when standing or moving about and sometimes my heart raced too fast or skipped a beat (Postural Orthostatic Tachycardia Syndrome -POTS - another thiamine deficiency disorder).  I started stuttering, and then slurring my words.  My voice became hoarse and at times I could not speak at all.  I forgot things easily.  I got frustrated easily.  I had difficulty concentrating.  I had difficulty with regulating emotions.  I could not read and understand things.  I could not remember verbal instructions.  I could no longer read and knit lace from charted knitting patterns.  I became very despondent.  

But I remembered that half a dozen doctors had asked me if I drank.  I would respond no, alcohol makes me sick. The doctors would scratch their heads, shrug their shoulders, and walk off.  No answers.  But that question rang a bell somewhere amongst the cobwebs.  I had to dig out my notes from university....Thiamine deficiency is most commonly found in (postmortem) alcoholism.  And malabsorption disorders like Celiac Disease!  

I stumbled upon Dr. Derrick Lonsdale who has studied Thiamine Deficiency Disorders outside of alcoholism for years.  Thiamine deficiency presents differently outside of alcoholism.  Eventually, severe thiamine deficiency symptoms outside of alcoholism overlap with alcoholic thiamine deficiency symptoms.  Those doctors saw those same severe symptoms, but they didn't treat it because I didn't drink alcohol.  If it walks like a duck....

So, I started high dose thiamine as Dr. Lonsdale described.  I took over-the-counter Thiamine Hydrochloride and had improvement within an hour.  I added in Allithiamine (TTFD - Tetrahydrofurfuryl Disulfide), a form of Thiamine that can cross the blood brain barrier by itself.  My brain started working again!  

I had other vitamin deficiencies concurrently.  Malabsorption messes with all the nutrients.  Thiamine deficiency symptoms show up first because it runs out fastest.  I had Vitamin D deficiency, Pellagra, Scurvy, and anemia.  

I eat Paleo.  I found that eating healthy fats (Omega Threes) is key.  The satiety center in the brain signals that full feeling after eating sufficient fats.  Olive oil is great.  I ate small meals closer together while I healed.  

A diet that is high in carbohydrates would make me feel awful.  Eating a large amount of carbohydrates at a meal demands an increased amount of Thiamine.  Carbohydrates like white rice and processed foods don't contain sufficient thiamine to digest and convert them into energy.  

I took vitamins and mineral supplements in order to give my body the essential building blocks it needed to repair and recover.  I feel much better now.  I can knit again!

I hope this helps.

References:

Hiding in Plain Sight: Modern Thiamine Deficiency by Dr. Derrick Lonsdale and Dr. Chandler Marrs

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

Thiamine Deficiency: Appetite and Eating Disorders

http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

And...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

And...

Omega-3 Fatty Acids And Inflammation – You Are What You Eat!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8846546/

And...

The importance of thiamine (vitamin B1) in humans

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568373/

 

[Always-Hungry-Kate]

Oh-my-gosh, YES, this was VERY helpful!  It was not until I joined these Celiac groups (this one and one via FB) that a whole new world of information is being shared with me.  I am so grateful for all of you.

I’m so sorry that you went through such Hell trying to find out what was wrong!  The only thing that’s making me feel better right now — with the help of all of you sharing your stories — is that I am sure that what I’m going through right now is absolutely all about this newly-diagnosed celiac disease.  My body is still getting used to this new diet and it’s going to take time.  
Like you, the last two doctors that I went to with my symptoms strongly advised me to start an anti-depressant, which I know I do not need.  My head is fine.  Also, since I broke down at my new GCP’s office (my voice was cracking and I teared-up), in explaining my symptoms to her, she even suggested that I go to a psychiatrist.  Ugh!  

Come on. That’s not the kind of help I need.  It has been stories like yours, among many others, that give me hope that I will find a way to feel “normal” again.  

[Always-Hungry-Kate]

9 hours ago, trents said:

Multivitamin products are not potent enough to jump start the correction of long term vitamin and mineral deficiencies we typically see in the adult celiac population, at least for those who went many years without a diagnosis. When you are in Costco or Walmart next time, compare the percentages of RMDA in the B vitamins found in a dedicated B-complex supplement to those found in an adult multivitamin. Huge difference. By the way, Costco is an excellent place to find good quality gluten-free vitamins and supplements. 

Thank you.  As soon as I have the results of my blood test and/or hear back from my new GCP, I’ll be reporting everything here — I will want to get people’s opinions and hear their insights.  This site has been a great help.