Brand New Celiac Here With Tons Of Questions

[rene83]

Good morning everyone,

My name is April and I was just diagnosed with celiac disease last Thursday! I was hoping to share my story and see if anyone else out there is like me and can offer me any "what to expect" advice. Thank you all in advance.

In a nutshell these were the weird symptoms I was experiencing:

1. Unexplained weight gain despite diet and exercise

2. Bone pain that progressed (I was scared of cancer)

3. Inability to sleep through the night or feel rested

4. EXTREME fatigue, all the time, no matter how much rest I got or caffeine I consumed

 

Surprisingly I have absolutely NO GI symptoms when I ingest gluten. It never affected my GI tract which is why it took so long to track down I guess. 

 

 

I have always been a very thin person until the past 2-3 years after my dad died suddenly (a lot of my family kicked the bucket in a matter of a year) and I started to gain weight presumably from stress. Of course I thought this was from depression so over the past year and a half I have spent my time feverishly working out (Insanity, P90X, Turbo Jam, personal trainer, kettle bells, you name it!) and actually gained weight and inches much to my chagrin. I went back and forth to my doctor whining about how I am getting fat (I gained 35 lbs in a year and a half despite proper diet and exercise) only to be told I am eating too much and told to cut my calories down to 1100 a day (yeah right)(I currently weigh 140 lbs am 5'0" and going to be 30 later this month yikes!!). So a friend referred me to a lovely holistic medicine doctor who did a plethora of tests on me (ironically that I had begged my normal practitioner to do which she refused) and found that I have celiac disease (homozygous for all 4 genes) and am SEVERELY malnourished. Functionally I am starving to death she said. There was barely a measurable trace of vitamin D in my blood (29 and low normal is 75), I only had slight traces of biotin and one other B vitamin that I can't remember, all the rest were MIA and the same went with my amino acids, out of 26 essential amino acids I only had traces of 3 in my body. Alas she told me this was due to malabsorption and the more I worked out the more my body stored fat as it thought I was starving and the increased calorie burn made my body freak out even more when I was working out 90 minutes a day. This made sense to me until I read that most celiacs actually can't gain weight which is the exact opposite of me. 

 

I am interested to hear other experiences to know what I may expect and if I am "normal" so to say. I am excited to have answers but am still scared as I am still gaining a ton of weight although I don't eat much and am very active. Thank you!!

[1desperateladysaved]

Good morning everyone,

My name is April and I was just diagnosed with celiac disease last Thursday! I was hoping to share my story and see if anyone else out there is like me and can offer me any "what to expect" advice. Thank you all in advance.

In a nutshell these were the weird symptoms I was experiencing:

1. Unexplained weight gain despite diet and exercise

2. Bone pain that progressed (I was scared of cancer)

3. Inability to sleep through the night or feel rested

4. EXTREME fatigue, all the time, no matter how much rest I got or caffeine I consumed

 

Surprisingly I have absolutely NO GI symptoms when I ingest gluten. It never affected my GI tract which is why it took so long to track down I guess. 

 

 

I have always been a very thin person until the past 2-3 years after my dad died suddenly (a lot of my family kicked the bucket in a matter of a year) and I started to gain weight presumably from stress. Of course I thought this was from depression so over the past year and a half I have spent my time feverishly working out (Insanity, P90X, Turbo Jam, personal trainer, kettle bells, you name it!) and actually gained weight and inches much to my chagrin. I went back and forth to my doctor whining about how I am getting fat (I gained 35 lbs in a year and a half despite proper diet and exercise) only to be told I am eating too much and told to cut my calories down to 1100 a day (yeah right)(I currently weigh 140 lbs am 5'0" and going to be 30 later this month yikes!!). So a friend referred me to a lovely holistic medicine doctor who did a plethora of tests on me (ironically that I had begged my normal practitioner to do which she refused) and found that I have celiac disease (homozygous for all 4 genes) and am SEVERELY malnourished. Functionally I am starving to death she said. There was barely a measurable trace of vitamin D in my blood (29 and low normal is 75), I only had slight traces of biotin and one other B vitamin that I can't remember, all the rest were MIA and the same went with my amino acids, out of 26 essential amino acids I only had traces of 3 in my body. Alas she told me this was due to malabsorption and the more I worked out the more my body stored fat as it thought I was starving and the increased calorie burn made my body freak out even more when I was working out 90 minutes a day. This made sense to me until I read that most celiacs actually can't gain weight which is the exact opposite of me. 

 

I am interested to hear other experiences to know what I may expect and if I am "normal" so to say. I am excited to have answers but am still scared as I am still gaining a ton of weight although I don't eat much and am very active. Thank you!!

Hi April,

 

I am so sorry you had to go through this.  I can relate to starving.  I recently found out the trace of blood, found in my urine since high school, probably was due to malnutrition.  I am however glad for you that you now have a definitive answer to your problem.  By the way, I am also 4/4 alleles on the genetic test.

 

Did your doctor recommend pancreatic enzymes?  If you have much damage, which it sounds like you do, the villi of the small intestine can't tell the pancreas to fire.  This is according to my Nurse Practitioner.  You could helped by a strong supplement program high in nutrients.  It may seem hard to start your new diet plan, but it will be easier than living like you've been living in the long run.

 

My water balance gets off as part of my struggle.  I gain weight from that.  The nurse said it has to do with my adrenal glands.  Once I lost 30 lbs in one week.  I hope you get a dramatic show like that for your efforts.  I hope you will soon feel like a bird free from its cage!

 

I hope you will have plenty of help on your new journey.  ***These are the best Get Well flowers I can send you.

 

Diana

[shadowicewolf]

Ah! you are probably part of the "silent" celiac group, aka those who do not have symptoms that are obvious.

 

We are all different. I dropped 40ish pounds in a little over a month (was really ill with GI issues). Some gain it.

 

I can see why your body would freak out. When in starvation type situation, the body tends to hoard calories (fats from food would be an example of this) like a dragon hoards gold. To my understanding this is part of the issue when people go on those fad diets that promise to drop a lot of weight and in the end do not really do much good. I am no expert on this, however. Just various things i have heard.

 

In your case, your body did it  because it was not getting what it needed.

 

I have no doubt that once your gut heals you will probably be able to loose that extra weight.

 

Feel free to as us anything and go read the Newbie thread (i'll edit  this post and link it).

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[Shawnaj]

Good morning everyone,

My name is April and I was just diagnosed with celiac disease last Thursday! I was hoping to share my story and see if anyone else out there is like me and can offer me any "what to expect" advice. Thank you all in advance.

In a nutshell these were the weird symptoms I was experiencing:

1. Unexplained weight gain despite diet and exercise

2. Bone pain that progressed (I was scared of cancer)

3. Inability to sleep through the night or feel rested

4. EXTREME fatigue, all the time, no matter how much rest I got or caffeine I consumed

 

Surprisingly I have absolutely NO GI symptoms when I ingest gluten. It never affected my GI tract which is why it took so long to track down I guess. 

 

 

I have always been a very thin person until the past 2-3 years after my dad died suddenly (a lot of my family kicked the bucket in a matter of a year) and I started to gain weight presumably from stress. Of course I thought this was from depression so over the past year and a half I have spent my time feverishly working out (Insanity, P90X, Turbo Jam, personal trainer, kettle bells, you name it!) and actually gained weight and inches much to my chagrin. I went back and forth to my doctor whining about how I am getting fat (I gained 35 lbs in a year and a half despite proper diet and exercise) only to be told I am eating too much and told to cut my calories down to 1100 a day (yeah right)(I currently weigh 140 lbs am 5'0" and going to be 30 later this month yikes!!). So a friend referred me to a lovely holistic medicine doctor who did a plethora of tests on me (ironically that I had begged my normal practitioner to do which she refused) and found that I have celiac disease (homozygous for all 4 genes) and am SEVERELY malnourished. Functionally I am starving to death she said. There was barely a measurable trace of vitamin D in my blood (29 and low normal is 75), I only had slight traces of biotin and one other B vitamin that I can't remember, all the rest were MIA and the same went with my amino acids, out of 26 essential amino acids I only had traces of 3 in my body. Alas she told me this was due to malabsorption and the more I worked out the more my body stored fat as it thought I was starving and the increased calorie burn made my body freak out even more when I was working out 90 minutes a day. This made sense to me until I read that most celiacs actually can't gain weight which is the exact opposite of me. 

 

I am interested to hear other experiences to know what I may expect and if I am "normal" so to say. I am excited to have answers but am still scared as I am still gaining a ton of weight although I don't eat much and am very active. Thank you!!

I am new to this forum, but was diagnosed 5 years ago through blood tests. I was pregnant so they didn't want to do the biopsy. But, I didn't have any of the "normal" symptoms either.

I was severely anemic - to the point that my OBGNY was ready to do a blood transfusion when I delivered. Because I was that anemic I had no energy and was basically a walking zombie.

I also had severe acid reflux (which I blamed on the Pregnancy) and later discovered the horrible leg cramps I had (like a charley horse in your shin) were also a symptom.

After multiple blood tests, my Dr. ordered the transglutimite test which was off the charts. I immediately stopped gluten and my symptoms began to dissappear. I am still struggling with anemia, but it's very slight now. Fatigue is gone and I haven't had a leg cramp since I stopped gluten. 

My advice: allow your body to heal first then explore your remaining symptoms. My fatigue was due to he anemia, so I would ask for hemoglobin blood tests and check your iron intake. 

 

Hope that helps a little. I wish there were as many resources out there when I was diagnosed. It's really just a learning curve, then it's automatic.

[pricklypear1971]

I would also ask for a thorough thyroid work up - tsh, free t3/t4, reverse t3, tpo ab....because Hashimotos and celiac run together quite a bit.

I am both, and experience exactly what you are talking about regarding weight gain and exercise. And the key to getting the inflammation down (probably half of my weight) is getting my thyroid and adrenals somewhere resembling normal. Gluten free only did half the job.

Nothing so frustrating as working out like a fiend and getting bigger - and struggling the whole way through.

Give yourself time to heal, go slow. I'm talking a time frame of YEARS to get to where you want to be. Gains will be made quickly, but they will come in spurts and stages.

Check your thyroid and READ about thyroid symptoms. Do not hesitate to challenge your doctor on your thyroid if you think you have problems that are beyond Celiac. The two can mimic each other, true. But they also frequently go together. I wouldn't harp on this if your post didn't resonate with me so strongly.

Good luck!

[GFinDC]

Ditto what Prickly said.

 

And welcome to t\he forum!

 

Some people do gain weight with celiac disease.   You should get a written copy of all your test results to keep at home.  That way you can compare your improved results for vitamin levels etc after 6 months or  year and see if things are looking better.  Don't be surprised if you actually develop more of an appetite after going gluten-free for a little while.  That is normal and is your body trying to get extra nutrients to build/repair tissue and heal.  You may even gain more weight for a while.  But over time as your body starts to get what it needs your appetite will most likely stabilize and decrease.  You should concentrate on whole foods, meats and veggies when starting the gluten-free diet.  Cook everything yourself and use single ingredient spices, not spice blends or seasoning mixes.  Read up on cc or cross-contamination.  It does make a difference.

 

 

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

[rene83]

 

 

Thanks Diana,

Yes my MD gave me pancreatic enzymes, B vitamins, multivitamins, omega 3&6, r-lipoic acid, and a couple other things. I swear I get full off of all the pills I have to slam down my gullet lol. 

[rene83]

I would also ask for a thorough thyroid work up - tsh, free t3/t4, reverse t3, tpo ab....because Hashimotos and celiac run together quite a bit.

I am both, and experience exactly what you are talking about regarding weight gain and exercise. And the key to getting the inflammation down (probably half of my weight) is getting my thyroid and adrenals somewhere resembling normal. Gluten free only did half the job.

Nothing so frustrating as working out like a fiend and getting bigger - and struggling the whole way through.

Give yourself time to heal, go slow. I'm talking a time frame of YEARS to get to where you want to be. Gains will be made quickly, but they will come in spurts and stages.

Check your thyroid and READ about thyroid symptoms. Do not hesitate to challenge your doctor on your thyroid if you think you have problems that are beyond Celiac. The two can mimic each other, true. But they also frequently go together. I wouldn't harp on this if your post didn't resonate with me so strongly.

Good luck!

Yes I did have my thyroid levels tested, T4 and T3 were normal reverse T3 was elevated. My dr also said my hemoglobin was suspiciously good considering how unhealthy I was so I will probably be doing a glucose tolerance test later to see if I am insulin resistant (no hx of diabetes in my family)

[rene83]

Ditto what Prickly said.

 

And welcome to t\he forum!

 

Some people do gain weight with celiac disease.   You should get a written copy of all your test results to keep at home.  That way you can compare your improved results for vitamin levels etc after 6 months or  year and see if things are looking better.  Don't be surprised if you actually develop more of an appetite after going gluten-free for a little while.  That is normal and is your body trying to get extra nutrients to build/repair tissue and heal.  You may even gain more weight for a while.  But over time as your body starts to get what it needs your appetite will most likely stabilize and decrease.  You should concentrate on whole foods, meats and veggies when starting the gluten-free diet.  Cook everything yourself and use single ingredient spices, not spice blends or seasoning mixes.  Read up on cc or cross-contamination.  It does make a difference.

 

 

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Thanks! Thankfully I love to cook and don't care for eating out much, now I just need to learn how to cook my favorites in a new fashion lol. I avoid sugars and starchy foods but why dairy and alcohol? I swear my yogurt and glass of wine a day are the only things that keep me sane lol!!!

 

 

Thank you all of you who have replied. It helps a lot to know I am not alone and to have veterans of celiac giving me some tips. Have a great day!!!!

[rene83]

Ah! you are probably part of the "silent" celiac group, aka those who do not have symptoms that are obvious.

 

We are all different. I dropped 40ish pounds in a little over a month (was really ill with GI issues). Some gain it.

 

I can see why your body would freak out. When in starvation type situation, the body tends to hoard calories (fats from food would be an example of this) like a dragon hoards gold. To my understanding this is part of the issue when people go on those fad diets that promise to drop a lot of weight and in the end do not really do much good. I am no expert on this, however. Just various things i have heard.

 

In your case, your body did it  because it was not getting what it needed.

 

I have no doubt that once your gut heals you will probably be able to loose that extra weight.

 

Feel free to as us anything and go read the Newbie thread (i'll edit  this post and link it).

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Thanks. Apologies if I posted wrong! 

[GFinDC]

Hi Rene,

 

Many people have problems with diary when they are new to the gluten-free diet.  Celiac disease damages the villi in the small intestine that produce the enzyme that digests diary sugar.  So it ends up causing lactose intolerance.  Not everyone has this problem, but many do.  Often enough the lactose intolerance goes away after being on the gluten-free diet for  awhile.

 

Alcohol is hard on the digestive system.  So it is not something that is helpful when you are trying to heal your digestive system.  Kind of like throwing water on a drowning person.  Not real helpful.  Also people with untreated celiac disease often have abnormally elevated liver enzymes.  Celiac disease puts a strain on your liver.  These levels tend to go back to normal after a while on the gluten-free diet though.

 

It is good for your healing to eat simple, easy to digest meals, and not overwork or strain your digestive system.  That's why digestive enzymes are helpful too.  The chemical signaling for the gall bladder to release bile is done by the small intestine, which is not in good shape with celiac damage.  Some people have gall bladder damage with celiac disease but it may clear up on the diet.

 

These tips are intended for people just starting the gluten-free diet, and not for long term.  The idea is to get a quick start on healing the fastest way possible, by limiting aggravating foods and adding helpful things.  Plus if you avoid processed foods you can avoid reading a lot of labels.  Very important if you are too skin-flinty to buy new glasses.   Oops, guess I am talking about myself there!   Oh, and if you don''t understand all the different gotchas about hidden gluten and cross contamination yet.  Which most people don't at the beginning of the diet.  It can take several months just to learn what not to eat.  At least for us slow learners it can.

 

If you aren't having problems with bloating and gassiness and diahrea, then dairy (lactose intolerance) may not be a problem for you.  These same symptoms can be present with celiac disease and gluten too, so  it eliminates some confusion to not have to worry about one of them at least.  Eliminating confusion gets to be very important when you get to be my age.  Now what was your question? 

 

Thanks! Thankfully I love to cook and don't care for eating out much, now I just need to learn how to cook my favorites in a new fashion lol. I avoid sugars and starchy foods but why dairy and alcohol? I swear my yogurt and glass of wine a day are the only things that keep me sane lol!!!

 

 

Thank you all of you who have replied. It helps a lot to know I am not alone and to have veterans of celiac giving me some tips. Have a great day!!!!

 

[itsmebiancap]

I did notice you said you would drink alot of coffee and still be tired.. that is very similar to what I experienced as well. I am not sure if you still drink coffee but I found out that even coffee you should check to make sure it is gluten free. The word is usually black coffee (plain no flavor) is but the coffee with the flavors (i.e. french vanilla) isn't. Also, if you love coffee houses you may want to ask them. As I had a really bad reaction to Starbucks the other day I researched it and found out that Starbucks advises you to not buy from there if you have any type of gluten related illness (i.e. celiac disease, GA, GI or gluten free of any sort). They said they cannot say whether it is safe or not because ingredients are constantly changing. They also said that even though some drinks may be gluten-free, the same stirrer is used for all products, so you may become stricken with cross contamination. However, the bottle Starbucks is gluten-free because its bottle by Pepsi and all Pepsi products are gluten-free.

 

 

Hope this helps!

 

I also am new to being gluten-free as I now have an intolerance. My weight dropped than increased and now it still is dropped but my pants size has dropped two sizes! I am not sure if this is actually normal or not because my apetite has fluctuated and is now becoming steady.

[kareng]

I did notice you said you would drink alot of coffee and still be tired.. that is very similar to what I experienced as well. I am not sure if you still drink coffee but I found out that even coffee you should check to make sure it is gluten free. The word is usually black coffee (plain no flavor) is but the coffee with the flavors (i.e. french vanilla) isn't. Also, if you love coffee houses you may want to ask them. As I had a really bad reaction to Starbucks the other day I researched it and found out that Starbucks advises you to not buy from there if you have any type of gluten related illness (i.e. celiac disease, GA, GI or gluten free of any sort). They said they cannot say whether it is safe or not because ingredients are constantly changing. They also said that even though some drinks may be gluten-free, the same stirrer is used for all products, so you may become stricken with cross contamination. However, the bottle Starbucks is gluten-free because its bottle by Pepsi and all Pepsi products are gluten-free.

Hope this helps!

I also am new to being gluten-free as I now have an intolerance. My weight dropped than increased and now it still is dropped but my pants size has dropped two sizes! I am not sure if this is actually normal or not because my apetite has fluctuated and is now becoming steady.

Yes you should check ingredients. Most flavored coffee beans are gluten-free. Most of the syrups at Starbucks are gluten-free. You just need to read the ingredients. I drink coffee and lattes and iced coffees from Starbucks all the time.

I'm not sure that a blanket statement that all Pepsi products are gluten-free is correct. I know all the sodas are. Once again, I would read the ingredients on a bottles coffee drink or energy drink to check. Can you show us where Pepsi made that statement. That would be very helpful.

[rene83]

I did notice you said you would drink alot of coffee and still be tired.. that is very similar to what I experienced as well. I am not sure if you still drink coffee but I found out that even coffee you should check to make sure it is gluten free. The word is usually black coffee (plain no flavor) is but the coffee with the flavors (i.e. french vanilla) isn't. Also, if you love coffee houses you may want to ask them. As I had a really bad reaction to Starbucks the other day I researched it and found out that Starbucks advises you to not buy from there if you have any type of gluten related illness (i.e. celiac disease, GA, GI or gluten free of any sort). They said they cannot say whether it is safe or not because ingredients are constantly changing. They also said that even though some drinks may be gluten-free, the same stirrer is used for all products, so you may become stricken with cross contamination. However, the bottle Starbucks is gluten-free because its bottle by Pepsi and all Pepsi products are gluten-free.

 

 

Hope this helps!

 

I also am new to being gluten-free as I now have an intolerance. My weight dropped than increased and now it still is dropped but my pants size has dropped two sizes! I am not sure if this is actually normal or not because my apetite has fluctuated and is now becoming steady.

You misread, I said caffeine I don't drink coffee, mainly tea that I brew myself. Thank you for the heads up though in case I decided I wanted starbucks or something!

 

 

On a side note I have been doing VERY well avoiding gluten this past week. I thought it would be more difficult but it really isn't )except if you want to grab a bite out somewhere lol). I think I am having gluten withdrawals however. I am SUPER weepy (not pregnant or PMS'ing or just being female lol) and so exhausted I can barely function. It is pretty awful right now  to be honest. All I wanna do is sleep. I actually found a sweet app for my iPhone called "ShopWell" which has a list of allergens you can select and other items to avoid and you can look up a food item or use the barcode scanner to see if it is gluten free. It is REALLY handy since I am adjusting to the plethora of names that gluten has. All these AKA's are killing me lol. 

 

 

Thank you all for your words of wisdom!!!! Now here's to feeling better!!! Have a great day!!!

[eers03]

Welcome to the forum!  You are in the right place.  I can't tell you how much reading what these gluten warriors post has helped me out in my daily life.

 

1. Bone Pain--I've had this too.  In my ribs, my collarbone, my wrists, my femur, all at some point or another.  Like you, I thought I had cancer.  I've been gluten-free about 6 months and most of that pain has gone away.  Still have some crop up here and there but overall is much resolved.  I take 2,000 IU's of Vitamin D every morning and most practitioners I have spoke with have been comfortable with it.  The Vitamin D acts as a bridge that allows calcium to cross and attach to bone in order to increase your bone density.  My Vitamin D was 30.  

 

2. Weight gain--I gained weight and then lost a bunch of weight before diagnosis.  I've been thin all my life, gained 10-15 pounds at one point, and then shedded lbs all the way down to 137lbs.  I started eating 3,000 gluten-free calories per day to get it back up and I'm sitting around 162 right now.  From my learnings, some people have trouble gaining weight for obvious reasons and then some people have issues losing or keeping it off.  If you are trying to lose it.  Lessen your caffeine intake, increase your water intake, reduce your gluten-free carb intake, increase your protein intake--ALL IN MODERATION.  Don't get all fired up and take such a diet to extremes and don't expect instant results!  If you are still working out, be careful not to carb starve yourself.  WATER, WATER, WATER.  The protein will make you feel fuller, the water will help your body get rid of wastes and toxins, the carbs are what your body tries to pull from first for energy and if there isn't much of it there to be had it will draw from fat reserves and muscle thereby reducing your weight.  MODERATION.  Carbs can be good, your brain needs them and so do you to get though a work out but track them and get your daily value.

 

3. Restless Sleep--Please forgive me for saying this...  Reduce your caffeine intake.  It sounds crazy trick your body.  If you drink coffee switch to a half-caff blend.  So in the morning you still feel like you are getting your coffee but the caffeine will be half.  The first couple days you'll feel the difference but after that, you will adjust.  Don't do your workouts late in the evening and if you lay around eating before bed it will make you sleep light anyhow.  This one will take time to make better but it will.  You're stressed about all these new sensations, aches, foods, norms, and it will occassionally keep you up at night.  Come to peace with your new lifestyle, don't be scared of some of the new aches, many of them will go away on their own when you least expect it.  Mine did.

 

4.  Extreme fatigue--Read number 3.  It certainly will not solve it but will get you headed on a better trajectory.  I went through this as well.  My issue was too much stress, too much caffeine during the day, and some anxiety/depression.  It's natural.  I made it through it.  I do not recommend over the counter sleep aids.  I did take a little melatonin at a low dose for no longer than probably a week when my sleeplessness was it its work.  Its over the counter but I made my doctor approve it and I recommend you do the same.

 

As for alcohol, caffeine, and not getting enough food/water...  These can all affect your bone density adversely.  Limit the caffeine.  As for the alcohol, your liver is probably already trying to repair itself and your body.  When you consume alcohol it has to work overtime on breaking down that alcohol which leaves it less time to heal itself, your body, and you.  Water helps it do its job.  Water will help reduce inflammation by flushing out toxins in your blood that cause inflammation.  

 

You're going to have some trial and error.  Find what works for you.  Don't walk around all day freaked out about your health like I did.  Eat gluten free, enjoy your day, enjoy your friends, thank God that you figured this thing out, and you'll do great!

 

PS--these are all things that worked for me.  To be safe you should run it all by your dietician or doctor to make sure it matches up with your needs.

[rene83]

Welcome to the forum!  You are in the right place.  I can't tell you how much reading what these gluten warriors post has helped me out in my daily life.

 

1. Bone Pain--I've had this too.  In my ribs, my collarbone, my wrists, my femur, all at some point or another.  Like you, I thought I had cancer.  I've been gluten-free about 6 months and most of that pain has gone away.  Still have some crop up here and there but overall is much resolved.  I take 2,000 IU's of Vitamin D every morning and most practitioners I have spoke with have been comfortable with it.  The Vitamin D acts as a bridge that allows calcium to cross and attach to bone in order to increase your bone density.  My Vitamin D was 30.  

 

2. Weight gain--I gained weight and then lost a bunch of weight before diagnosis.  I've been thin all my life, gained 10-15 pounds at one point, and then shedded lbs all the way down to 137lbs.  I started eating 3,000 gluten-free calories per day to get it back up and I'm sitting around 162 right now.  From my learnings, some people have trouble gaining weight for obvious reasons and then some people have issues losing or keeping it off.  If you are trying to lose it.  Lessen your caffeine intake, increase your water intake, reduce your gluten-free carb intake, increase your protein intake--ALL IN MODERATION.  Don't get all fired up and take such a diet to extremes and don't expect instant results!  If you are still working out, be careful not to carb starve yourself.  WATER, WATER, WATER.  The protein will make you feel fuller, the water will help your body get rid of wastes and toxins, the carbs are what your body tries to pull from first for energy and if there isn't much of it there to be had it will draw from fat reserves and muscle thereby reducing your weight.  MODERATION.  Carbs can be good, your brain needs them and so do you to get though a work out but track them and get your daily value.

 

3. Restless Sleep--Please forgive me for saying this...  Reduce your caffeine intake.  It sounds crazy trick your body.  If you drink coffee switch to a half-caff blend.  So in the morning you still feel like you are getting your coffee but the caffeine will be half.  The first couple days you'll feel the difference but after that, you will adjust.  Don't do your workouts late in the evening and if you lay around eating before bed it will make you sleep light anyhow.  This one will take time to make better but it will.  You're stressed about all these new sensations, aches, foods, norms, and it will occassionally keep you up at night.  Come to peace with your new lifestyle, don't be scared of some of the new aches, many of them will go away on their own when you least expect it.  Mine did.

 

4.  Extreme fatigue--Read number 3.  It certainly will not solve it but will get you headed on a better trajectory.  I went through this as well.  My issue was too much stress, too much caffeine during the day, and some anxiety/depression.  It's natural.  I made it through it.  I do not recommend over the counter sleep aids.  I did take a little melatonin at a low dose for no longer than probably a week when my sleeplessness was it its work.  Its over the counter but I made my doctor approve it and I recommend you do the same.

 

As for alcohol, caffeine, and not getting enough food/water...  These can all affect your bone density adversely.  Limit the caffeine.  As for the alcohol, your liver is probably already trying to repair itself and your body.  When you consume alcohol it has to work overtime on breaking down that alcohol which leaves it less time to heal itself, your body, and you.  Water helps it do its job.  Water will help reduce inflammation by flushing out toxins in your blood that cause inflammation.  

 

You're going to have some trial and error.  Find what works for you.  Don't walk around all day freaked out about your health like I did.  Eat gluten free, enjoy your day, enjoy your friends, thank God that you figured this thing out, and you'll do great!

 

PS--these are all things that worked for me.  To be safe you should run it all by your dietician or doctor to make sure it matches up with your needs.

Thanks for the tips. I am quite sensitive to caffeine so I don't drink any caffeine containing beverages after noon. I also am drinking my normal 120 ounces of water a day

 

I am 10 days into my gluten free and I am hoping the withdrawal symptoms go away in the next couple of days, the exhaustion is almost more than I can bear and the moodiness is horrid!! As for my restless sleep my dr explained this is because I am not absorbing any amino acids so I can't make neurotransmitters essential for sleep (this was confirmed with a NT test where I had like nothing other than a stress NT, can't remember the name of it. Sheesh I am not even producing cortisol anymore bc of my malnutrition).

 

 

Is it normal to be scared out of your mind that you are getting small amounts of gluten unknowingly while you are initially gluten free? I am petrified right now, but I know that if that were the case my withdrawal symptoms would most likely cease and I would get to start from square one all over again. 

 

I am hoping to feel better soon, right now I feel like absolute garbage and am not a happy camper. Thank you all once again for your support. 

[GFinDC]

HI Rene,

 

I was pretty paranoid about gluten early in the diet.  I think that can be helpful actually as there are lots of new things to learn and new habits to learn.  Like reading labels every time, and being aware of CC possibilities.  It's ok to be little concerned about your health after all, when you have a chronic incurable disease.  But celiac is probably the best chronic incurable disease out there too.  We got a winner disease!

[rene83]

Ooh I have some questions that I just realized. So Ia ms hopping at a local market in the gluten free area and then across I see some times that are gluten free  "however" it has the warning "Processed on machinery that processes wheat, soy...". Now let me back up a minute, I also have SEVERE allergies (anaphylaxis) to shellfish and mushrooms and an intolerance to soy (not lecithin weirdly enough and I can tolerate soy sauce in small amount, that will have to be gluten free now lol) but how big of a concern is cross contamination?

 

I am sorry I feel stupid asking this, but while shellfish can kill me in minutes, wheat won't, however wheat has been starving me slowly to death so in a sense it is life threatening, esp for a celiac.

 

Anyways I would love your experiences with eating things that could have been cross contaminated, things that have been and so on. I am trying to figure out how safe it really is (I know this is a HUGE danger in restaurants) for me to eat something that could have possibly been cross contaminated.  As always thank you so much for your guidance and support!!!!

[eers03]

Thanks for the tips. I am quite sensitive to caffeine so I don't drink any caffeine containing beverages after noon. I also am drinking my normal 120 ounces of water a day

 

I am 10 days into my gluten free and I am hoping the withdrawal symptoms go away in the next couple of days, the exhaustion is almost more than I can bear and the moodiness is horrid!! As for my restless sleep my dr explained this is because I am not absorbing any amino acids so I can't make neurotransmitters essential for sleep (this was confirmed with a NT test where I had like nothing other than a stress NT, can't remember the name of it. Sheesh I am not even producing cortisol anymore bc of my malnutrition).

 

 

Is it normal to be scared out of your mind that you are getting small amounts of gluten unknowingly while you are initially gluten free? I am petrified right now, but I know that if that were the case my withdrawal symptoms would most likely cease and I would get to start from square one all over again. 

 

I am hoping to feel better soon, right now I feel like absolute garbage and am not a happy camper. Thank you all once again for your support. 

It is absolutely normal to be paranoid about getting glutened!  Especially early on.  I have relaxed a little because I can only do so much.  I'm going to slip here or there and I just have to make sure to do my best not to let my guard down and consume it on accident.  I had a particularly difficult sleeping early on as well.  I'm not exactly a sound sleeper yet but its much improved.  It takes a LONG time.  You'll get there though.

[rene83]

Just an update, I am almost 3 weeks in and have never felt worse in my life. The emotionalness, the break outs, the GI craziness, the extreme fatigue, the brain fog. Holy crud I just want to go back to eating gluten just to feel normal. I am MISERABLE. My dr said it would only last 11-14 days and each day I am feeling worse. To boot I haven't been able to sleep at all the past 3 days and have been quite weak and faint. I feel like I am never going to feel better. 

 

I am still really worried about cross contamination and if there is a threshold for what it takes to be "glutened". I am avoiding eating out at every cost but I am really curious about those items such as nuts lets say that have the "this was processed in a place that shares machinery with wheat" stuff..... 

[itsmebiancap]

The comment I made in regards to Pepsi products being gluten free was in an article I read online by a celiac journalist. She pointed out that she has celiac disease and has never had a problem at Starbucks however when she contacted the corporation Starbucks informed her that they wouldn't recommend buying (in store) any of their products because they cannot garuntee it because of cross contamination. But they would recommend instead using drinking their bottle coffee because that is gluten free.

 

**I think I spelled garuntee wrong..  

[itsmebiancap]

Also, I would have to say in regards to not sleeping well. I do drink caffeine usually through coffee. Rarely soda. I usually don't drink it past 4/5pm. However I still have trouble sleeping. I find that being gluten free usually gives me many restless nights. I get a small window of being tired. If I don't fall asleep in that window which is usually around 7pm (way too early for bed) I can't fall asleep until 11p/12am. I read alot of articles saying many people with a gluten intolerance/sensitivity/celiac disease have sleep problems. If there is any advice you can give me to stop me from being so alert and resting I would love to take it itoo!

[itsmebiancap]

That I think is pretty normal. I went through that too then it switched and I went to high energy no brain fog and super happy always. Cross contamination will happen with more allergies to look out for I would say be careful. Gluten cross contamination triggers you differently each time and affects your body differently I think. Sometimes I would become like narcoleptic other times I would have pangs in my stomache or a headache or nothing. I would just ask them (when dining out) to cook my food seperately due to high allergies (pretty sure you already do). The problem with cross contamination is that you don't know how much risk it imposes sometimes none others much. However the more you cut out the more expensive this allergy free lifestyle becomes. The products you use most often make sure they are all allergy the ones you use on occasion buy whatever is most economical that doesn't pose much of a threat. Thats what I do and usually it pays off. Its only so much you can avoid because after a while it will become burdensome. I hope this helps.

Just an update, I am almost 3 weeks in and have never felt worse in my life. The emotionalness, the break outs, the GI craziness, the extreme fatigue, the brain fog. Holy crud I just want to go back to eating gluten just to feel normal. I am MISERABLE. My dr said it would only last 11-14 days and each day I am feeling worse. To boot I haven't been able to sleep at all the past 3 days and have been quite weak and faint. I feel like I am never going to feel better. 

 

I am still really worried about cross contamination and if there is a threshold for what it takes to be "glutened". I am avoiding eating out at every cost but I am really curious about those items such as nuts lets say that have the "this was processed in a place that shares machinery with wheat" stuff..... 

[1desperateladysaved]

Hmm, m y lowest lows were often followed by higher highs.  I hope you will be marveling at similar things soon.  Keep up the good work, you are getting somewhere!

 

D

[kareng]

The comment I made in regards to Pepsi products being gluten free was in an article I read online by a celiac journalist. She pointed out that she has celiac d

 

 

What comment?  You are  the first response on this thread since May of last year? Were you responding to a current thread?   Did you get lost?