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In Need Of Help Please!


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13 replies to this topic

#1 rwb9wg

 
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Posted 30 January 2013 - 01:08 PM

Hi there,

I am a 20 year old student at UVA and was diagnosed with Celiac's in September, possibly due to mono which could have affected by immune system and turned on the gene for it (since I had absolutely no issues with it for the first two decades of my life). Since then, I have stopped having gluten, I am sure at first I got it in some ways, but for the past few months I have been extremely careful. However, I am still having a lot of symptoms and I just don't know what to do, my GI says it could be just that it's taking the intestine a long time to heal, but I don't know if anyone else feels like this quite constantly:

-abdomen/flank/back pain especially on the left side (pretty constant pain)
-VERY cloudy head, hard to think
-extreme fatigue/body ache/hard to move around properly (even after lots of sleep)
-seems like my abdomen/flank has narrowed on both sides (outer skin)

I just had a colonoscopy and ultrasound this past weekend which showed everything was normal, although maybe some liquid in my right lung?

If anyone has any ideas of related conditions or anything really, it would be much appreciated! It's hard to go on like this every day which class, especially when I'm trying so hard with the diet!

Thanks a bunch
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#2 1desperateladysaved

 
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Posted 30 January 2013 - 01:45 PM

Oh, so sorry you have to suffer this. All I can say is to keep giving yourself every chance to heal. I did college with a cloudy head, long ago. I am so glad that you have discovered what is wrong. Get Well Soon***

Diana
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#3 mushroom

 
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Posted 30 January 2013 - 02:30 PM

Have you eliminated dairy for now, as well? Celiacs often are unable to digest dairy until they are completely healed - at least the heavy-lactose dairy like milk, cream, ice cream because of gluten damage to the area that makes the enzyme for it. If you haven't already done so, give that a try, and welcome to the board :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 GFinDC

 
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Posted 30 January 2013 - 02:33 PM

HI,

If you have celiac disease you won't improve a lot until you get all gluten out of your diet. That means even small amounts like from a shared toaster or shared peanut butter jar etc. It may be difficult in a college environment if you are on a meal plan. But it makes sense to talk to your academic adviser to see if the school can accommodate your dietary needs. The safest bet is to make all your food from scratch yourself. Sharing a kitchen with gluten eaters who don't understand cross contamination issues could be difficult. You didn't tell us much about your situation and how you are eating so I am just guessing at some possible issues.

Some starting the gluten-free diet tips for the first 6 months:

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
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 Lisarose

 
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Posted 30 January 2013 - 02:42 PM

Hello,
Agreed with the above post... it takes a while to heal and its really easy to be accidently exposed, if you make your food your self, that will help quite a bit, a lot of pre made foods contain gluten and are listed in ways that make it tough to discern... as a student, I know you are really busy but when you have a second, continue to read up on celiac ingredient sites, explore all the hidden gluten and terms, eventually you will be able to read an ingredient list and know right away if you can have it... hope you feel better..
Take care and keep in touch,
Lisarose
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#6 rwb9wg

 
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Posted 30 January 2013 - 08:04 PM

HI,

If you have celiac disease you won't improve a lot until you get all gluten out of your diet. That means even small amounts like from a shared toaster or shared peanut butter jar etc. It may be difficult in a college environment if you are on a meal plan. But it makes sense to talk to your academic adviser to see if the school can accommodate your dietary needs. The safest bet is to make all your food from scratch yourself. Sharing a kitchen with gluten eaters who don't understand cross contamination issues could be difficult. You didn't tell us much about your situation and how you are eating so I am just guessing at some possible issues.

Some starting the gluten-free diet tips for the first 6 months:

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
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/


Hey there,

Thanks for your response!
Well, I've been as good as I can and as the situation allows-
I'm not on a meal plan and do all my own cooking, I have bought my own pot, pans, and cutting board (not wooden) that only I use hear at school and keep in my room so no one else does. And I don't use a toaster ever. I know that cross contamination is a big issue, but I have been super careful and it's honestly easier to do so here than at home where my family all continues to eat gluten but is more careful when I'm at home.
  • 0

#7 GottaSki

 
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Posted 30 January 2013 - 09:02 PM

Just an opinion...your immune system is still trying to fight something. I apologize that I read your post quickly -- when did you have mono? Did the docs run the test that can detect it well after you are feeling better?

I do agree that if you have been gluten-free -- carefully for several months -- you should remove dairy minimally -- possibly some other foods -- but if you have recently tightened your diet to eliminate all sources of gluten, give it a bit more time.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 Hala

 
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Posted 31 January 2013 - 02:26 AM

Hi there,

I am a 20 year old student at UVA and was diagnosed with Celiac's in September, possibly due to mono which could have affected by immune system and turned on the gene for it (since I had absolutely no issues with it for the first two decades of my life). Since then, I have stopped having gluten, I am sure at first I got it in some ways, but for the past few months I have been extremely careful. However, I am still having a lot of symptoms and I just don't know what to do, my GI says it could be just that it's taking the intestine a long time to heal, but I don't know if anyone else feels like this quite constantly:

-abdomen/flank/back pain especially on the left side (pretty constant pain)
-VERY cloudy head, hard to think
-extreme fatigue/body ache/hard to move around properly (even after lots of sleep)
-seems like my abdomen/flank has narrowed on both sides (outer skin)

I just had a colonoscopy and ultrasound this past weekend which showed everything was normal, although maybe some liquid in my right lung?

If anyone has any ideas of related conditions or anything really, it would be much appreciated! It's hard to go on like this every day which class, especially when I'm trying so hard with the diet!

Thanks a bunch


I don't have any advise for you because I'm experiencing the same thing, I just wanted to let you know you're not alone!

I was diagnosed 11 weeks ago (to this day!) and am in constant discomfort! I feel like I have far more symptoms now than before going gluten-free, although they are different ones and it may be just that I'm more conscious of them....

I have a constantly tender abdomen, occasional chest pain, sharper stomach and back pains, cloudy head, worrying weight-loss, constantly FREEZING COLD body temp, facial swelling, extreme muscle fatigue and lack of energy/momentum, nausea and a narrowed flank on both sides (but could be reduced bloating/weight-loss?) and also GI symptoms. I feel like my insides are really...'raw' all the time and can't deal with anything at all!

I am also a student and have also done all I can to avoid cross-contamination....(which is a challenge when living in a student house with gluten-loving fellow students....I don't think anyone loves cereal and toast as much as these guys!)

I hope we both start feeling better soon. Take some comfort in knowing there's others out there feeling the same way. I also am getting no answers from my doctor besides "recovery takes a long time". None of the doctors round here know anything about celiac disease either...
  • 0

Diagnosed with Coeliac Disease after positive blood test and endoscopy (total villous atrophy and inflammation)

Gluten-free since 13th November 2012

Asperger's Syndrome.

Crohn's Disease.

Pancreatic Insufficiency.


#9 GFinDC

 
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Posted 31 January 2013 - 06:57 AM

Hey there,

Thanks for your response!
Well, I've been as good as I can and as the situation allows-
I'm not on a meal plan and do all my own cooking, I have bought my own pot, pans, and cutting board (not wooden) that only I use hear at school and keep in my room so no one else does. And I don't use a toaster ever. I know that cross contamination is a big issue, but I have been super careful and it's honestly easier to do so here than at home where my family all continues to eat gluten but is more careful when I'm at home.


Hi,

It really can take months to a year or more to get better on the gluten-free diet. However you should start having some improvement in the first 6 months of being 100% gluten-free. If you still have symptoms after 6 months, it makes sense to consider other possibilities, including removing other foods from your diet or even other medical conditions. It is not uncommon for people on the forum to have other food intolerances show up after going gluten-free. But really you haven't been on the diet very long, so if you can stick with the tips I listed earlier that may help. It can take a while to sort out how your body reacts to different foods. But after you have been on a whole foods diet for a while and a simple diet things start to make more sense. A simple diet is a good idea for lots of reasons. But especially as you can identify problem foods easier if there are not as many of them to consider. It is easier to figure out a problem food if your diet has 20 items in it than it is if your diet has 1000 items in it. The good thing is that with celiac disease you can get better just by changing your diet. And the diet gets easier the longer you have been on it. After a while it is just the way you eat, not anything unusual.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 frieze

 
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Posted 02 February 2013 - 10:42 AM

I don't have any advise for you because I'm experiencing the same thing, I just wanted to let you know you're not alone!

I was diagnosed 11 weeks ago (to this day!) and am in constant discomfort! I feel like I have far more symptoms now than before going gluten-free, although they are different ones and it may be just that I'm more conscious of them....

I have a constantly tender abdomen, occasional chest pain, sharper stomach and back pains, cloudy head, worrying weight-loss, constantly FREEZING COLD body temp, facial swelling, extreme muscle fatigue and lack of energy/momentum, nausea and a narrowed flank on both sides (but could be reduced bloating/weight-loss?) and also GI symptoms. I feel like my insides are really...'raw' all the time and can't deal with anything at all!

I am also a student and have also done all I can to avoid cross-contamination....(which is a challenge when living in a student house with gluten-loving fellow students....I don't think anyone loves cereal and toast as much as these guys!)

I hope we both start feeling better soon. Take some comfort in knowing there's others out there feeling the same way. I also am getting no answers from my doctor besides "recovery takes a long time". None of the doctors round here know anything about celiac disease either...

Get tested for hypothyroid.....like, yesterday!
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#11 Hala

 
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Posted 02 February 2013 - 01:01 PM

Get tested for hypothyroid.....like, yesterday!


I get regular blood panels and my thyroids are supposedly fine...?
  • 0

Diagnosed with Coeliac Disease after positive blood test and endoscopy (total villous atrophy and inflammation)

Gluten-free since 13th November 2012

Asperger's Syndrome.

Crohn's Disease.

Pancreatic Insufficiency.


#12 mushroom

 
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Posted 02 February 2013 - 02:26 PM

The complete thyroid panel is seldom run. It consists of the following:
  • Hypersensitive thyroid-stimulating hormone (TSH)
  • free thyroxine (fT4)
  • free triiodothyronine (fT3)
  • reverse T3 (rT3)
  • anti-thyroglobulin antibodies (anti-TG)
  • anti-thyroid peroxidase antibodies (anti-TPO)
  • fT4/fT3
  • fT3/rT3
It would be very rare for this to be run in a regular blood panel; normally they just check the TSH, and even for that they often use the wrong range, so unless you have a raging thyroid imbalance, thyroid problems are seldom picked up without the other tests. Your doctor will probably tell you you only need those if your TSH is off, but your doctor, IMHO, would be wrong.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#13 Hala

 
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Posted 02 February 2013 - 06:36 PM

The complete thyroid panel is seldom run. It consists of the following:

  • Hypersensitive thyroid-stimulating hormone (TSH)
  • free thyroxine (fT4)
  • free triiodothyronine (fT3)
  • reverse T3 (rT3)
  • anti-thyroglobulin antibodies (anti-TG)
  • anti-thyroid peroxidase antibodies (anti-TPO)
  • fT4/fT3
  • fT3/rT3
It would be very rare for this to be run in a regular blood panel; normally they just check the TSH, and even for that they often use the wrong range, so unless you have a raging thyroid imbalance, thyroid problems are seldom picked up without the other tests. Your doctor will probably tell you you only need those if your TSH is off, but your doctor, IMHO, would be wrong.


Thanks Mushroom, I suspected as much! My local doctors are awful though, and very financially-constricted. They don't offer allergy/intolerance testing at all and when I asked about thyroid testing they basically shot me down, and said regular blood tests would be adequate. I will go and see my GP on monday to do some begging. I can't live feeling this ill all the time. It's an effort just to walk up stairs. I used to be so very fit and healthy.... :(
  • 0

Diagnosed with Coeliac Disease after positive blood test and endoscopy (total villous atrophy and inflammation)

Gluten-free since 13th November 2012

Asperger's Syndrome.

Crohn's Disease.

Pancreatic Insufficiency.


#14 frieze

 
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Posted 03 February 2013 - 09:38 AM

Thanks Mushroom, I suspected as much! My local doctors are awful though, and very financially-constricted. They don't offer allergy/intolerance testing at all and when I asked about thyroid testing they basically shot me down, and said regular blood tests would be adequate. I will go and see my GP on monday to do some begging. I can't live feeling this ill all the time. It's an effort just to walk up stairs. I used to be so very fit and healthy.... :(

You may need to pay for appropriate testing. At least get your last TSH and share with us. If they refuse, demand that they give you written reason why.
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