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Need Some Advise And Support


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23 replies to this topic

#1 KatieJo88

 
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Posted 19 February 2012 - 03:37 PM

Hey Everyone!
My name is Katie and I have been gluten free since August 2011. I have gone through many different doctors and test to find out what was wrong with me and I finally read a book about gluten free diet (hasselbeck). I went gluten free and surprisingly most of my symptoms were gone. Surely this can be true, I said, so id go back to eating gluten. Each time I have done this I have said "BIG MISTAKE!" and gone back to eating gluten free.
Well the problem is my mother and family. My mom thinks it is stupid (she has not said this, but, my her remarks I can tell she thinks so.) It makes me feel stupid and I feel like maybe its in my head. Which everyone seems to want to tell me. Well the remarks have gotten the best of me again and I went and ate gluten today. Does anyone else have this problem with feeling silly? It is so aggravating that they don't know what pain you go through and cant just accept it. I also have found out I am intolerant to soy, dairy, and yeast also to make matters worse. I have tried to get the testing to verify I have celiac or gluten intolerance but I can not afford the testing. I think that unless I have that written on a piece of paper, I will be taken as a "joke" or "hypochondriac". Has anyone else had this problem or have some advise for me? Also, has anyone diagnosed themselves because they have simply given up like me?

Thanks everyone,
Katie
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#2 mamaw

 
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Posted 19 February 2012 - 05:02 PM

Hi
Yes, many people dx's themselves...& yes, always people think we are a bit crazy over the top!!!!!
Testing is the best way to make people understand but at times that isn't even enough..Just a tip: one needs to be eating wheat when getting tested .If not then your results will not be accurate or correct..
celiac is covered under the disabilities act so for that reason alone testing is needed.....
Many dx's themselves because insurance is not available to them. And if you are an adult & have tried the gluten-free diet , feel better then by all means stick to the diet..And ingore the people who call you strange! Your health is more important ..........and you know your body...
Going gluten-free has never killed anyone! But needing to be gluten-free & not being gluten-free can cause illness & death....rare but it does happen....

blessings mamaw
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#3 Marilyn R

 
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Posted 19 February 2012 - 05:43 PM

Hi Katie,

I wholeheartedly agree with mamaw. It's not like you're smoking, something that would be harmful to your health and something that would be reasonable for your mother to be upset about.

I'm not diagnosed with celiac disease, but I suffer from fairly severe neurological and gastrointestinal issues if I accidently ingest gluten. I spend quite a bit of time on the weekends cooking and freezing foods so that I'm prepared food wise and won't bother friends or relatives with special requirements. I have a little cooler and a little thermos that work great.

Is it a possibility that your mother has it too? (Mine did, and she couldn't deal with the dietary restricions.) I think the restrictions are a piece of cake in comparison to the reactions.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 mushroom

 
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Posted 19 February 2012 - 06:54 PM

If only it were "all" in your head, Katie, as in 'a figment of your imagination', rather than in your gut where it is doing its damage. We have to learn to develop a thick hide and a strong will to withstand those who will label us stupid and attempt to deter us from following the path to good health. Don't be lured by the siren call of gluten or be hurt by the ridicule of the ignorant. :rolleyes: Do what you know you need to do to stay healthy. I am totally self diagnosed because no one ever thought to test a "head case" :D Except for later when I convinced my then PCP to test me for the typical celiac nutrient deficiencies - I had most of them.
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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"

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(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
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Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 Adalaide

 
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Posted 19 February 2012 - 07:11 PM

My dad (who is the parent that passed this lovely illness on to me) has spent pretty much my entire life convinced I'm a hypochondriac. I long ago made peace with the fact that he is how he is and although he was never the father I wanted, I have no reason to doubt he loves me. Fortunately for me, I'm 2000 miles away so I don't have to listen to him try to coax me into beer or bread constantly. This is all very new to me and so far the only symptom going gluten free has alleviated is gas that always smelled so bad it could gag a maggot. Still, I'd probably have to have a gun to my head for anyone to talk me into eating gluten on purpose. I happen to be a huge fan of not having the windows open when it's like 10 degrees outside. I know it can be hard when a parent puts on the pressure but it's your health at risk. You need to put your foot down. Tell her that a significant number of people are self-diagnosed and that if she needs a doctor to say you're sick she can pay for the test.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

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#6 AVR1962

 
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Posted 19 February 2012 - 11:50 PM

Hey Everyone!
My name is Katie and I have been gluten free since August 2011. I have gone through many different doctors and test to find out what was wrong with me and I finally read a book about gluten free diet (hasselbeck). I went gluten free and surprisingly most of my symptoms were gone. Surely this can be true, I said, so id go back to eating gluten. Each time I have done this I have said "BIG MISTAKE!" and gone back to eating gluten free.
Well the problem is my mother and family. My mom thinks it is stupid (she has not said this, but, my her remarks I can tell she thinks so.) It makes me feel stupid and I feel like maybe its in my head. Which everyone seems to want to tell me. Well the remarks have gotten the best of me again and I went and ate gluten today. Does anyone else have this problem with feeling silly? It is so aggravating that they don't know what pain you go through and cant just accept it. I also have found out I am intolerant to soy, dairy, and yeast also to make matters worse. I have tried to get the testing to verify I have celiac or gluten intolerance but I can not afford the testing. I think that unless I have that written on a piece of paper, I will be taken as a "joke" or "hypochondriac". Has anyone else had this problem or have some advise for me? Also, has anyone diagnosed themselves because they have simply given up like me?

Thanks everyone,
Katie

Katie, you are so not alone and I hope others will share in their own experiences here as what you have posted is quite common. We have been told since small children the importance of wheat in our diet and then for us to realize this is not true, some cannot grasp. If you start reading how damaging gluten is for the body you are going to wonder why more people are not on a gluten-free diet. Dr oz says that soemthing like 88% of the population cannot digest wheat properly, that is a huge %!

My adult daughters were the first in my family to take gluten out of their diet. My mom was the worst as far as cutting them down. She made remarks about how this was all in their heads and all they needed to do was eat a good healthy diet and they would be fine. I questioned what my daughters were doing and I asked alot of questions. Ugh, guess who has the diagnosis of celiac? Yep, me!

My mother has made the comment how vitamins and supplements are junk. I was suffering from a lack of nutrients and supplementing and she knew it. She feels the only real way to get the proper nutrition is thru food. And while it is ideal, if your system is damaged a prson needs help and I was one of them. My sister made jokes about her stomach and said "she thought it was wheat and then she relaized she was just fat." What I realize is that unless this happens to them they have no way to comprehend what I am dealing with. I'm not the one with the problem and I am not the one in denial. They have to deal with their own issues, I have nothing to prove to them. What they have shown is their lack of compassion and pure ignorance.

My blood work got all messed up in the beginning so gastro doc wanted to repeat the process which I tried and made it to day 12. I was just too sick to continue....he wnated me on gluten for 2 months. I went back in and told him that I had to go off the gluten but I did want this documented in my medical records. I thought that would be the end of it and I would have no diagnosis but my body continued to have issues and everything kept leading docs back to celiac. After 7 months of tests for everything else I finally got a "careful" diagnosis of celiac. I have been gluten-free for 10 months and while alot of my issues have been resolved by the diet, I am still chasing those things associated with the disease.

Annette
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#7 yolo

 
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Posted 20 February 2012 - 12:36 AM

I just posted this article by Dr. Mark Hyman onto Facebook from my SF Bay Area celiac network:
http://www.huffingto..._b_1274872.html

Read it! It shows whether or not you have celiac or severe gluten sensitivity, gluten can in fact still be messing quite deteriously with your life.

For naturopaths and doctors who actually are paying attention to this problem with wheat etc., many suggest that simply going off the gluten is the best test, bar none.

I know for me I had mostly gone off it, but did not get the full benefits until I also went off all trace gluten, and also eventually discovered other things I was reacting to too--and began to avoid them.

The thing is to learn to trust your own experience. You know your condition better than anyone else. Don't let others' opinions stop you. Just take the precautions and planning you need to take care of yourself to be healthy. For those who insist you eat the wrong things, perhaps its time to consider spend less time with them since obviously your well being may, in all probability, not be on their true agenda. And by all means stick to your guns.

Bea
  • 2
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#8 Lori2

 
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Posted 20 February 2012 - 11:22 AM

Excellent article. Thanks for posting.
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#9 KatieJo88

 
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Posted 21 February 2012 - 10:36 AM

Thank you everyone for your comments and support. Well that will be the LAST time that I even attempt to eat gluten in hopes of proving myself to others. I have proven it to myself and my fiance believes and sees the pain I go through. That is the only person that matters to me and if he can see it and believes in not "crazy" than that's good enough for me. I haven't had a reaction this bad in a while and its enough for me to give it up for good. Thank you again for the support and comments. Y'all really helped me realize that its not about pleasing others (because no one will ever understand) its what I have to do for my health.

Katie<3
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Katie Jo <3

#10 yolo

 
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Posted 21 February 2012 - 10:51 AM

Thank you everyone for your comments and support. Well that will be the LAST time that I even attempt to eat gluten in hopes of proving myself to others. I have proven it to myself and my fiance believes and sees the pain I go through. That is the only person that matters to me and if he can see it and believes in not "crazy" than that's good enough for me. I haven't had a reaction this bad in a while and its enough for me to give it up for good. Thank you again for the support and comments. Y'all really helped me realize that its not about pleasing others (because no one will ever understand) its what I have to do for my health.

Katie<3



Good luck to you Katie! I am betting you will soon start feeling better and better.

Meanwhile you might want to invest in some enterically coated probiotics to help you feel better sooner. L-glultamine also helps out a lot of people by soothing and healing the lining of the gut.
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#11 Marilyn R

 
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Posted 21 February 2012 - 06:17 PM

I wish you the best too, Katie, and am only piping in to mention that there are some precautions with L-Glutamine and celiac disease, diagnosed or undiagnosed. That may be something you want to check out in conjunction with protecting your liver.

The gluten-free diet won't hurt you, and could very well help you very much.

The only thing I'm saying is that free advice is worth what you pay for it and you might want to shy away from taking L-Glutamine (because it gave me bad liver lab values after taking it daily for six months). That could just be me though. And I like Bea, really do, but she doesn't seen to consistently have back up documentation for why she's recommending something.

Wish you well, I have a niece named Katie, just looking after you. I'm not sure if this is a good source. but it made sense to me. http://www.livestron...liver-problems/ Celiac is an autoimmune disease.

Funny I bought the supplement only because my dear old dog responded so well to it...better than she did on steroids.

That's just my take on the subject, I could be wrong, but I feel strongly enough about it to write.

M
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#12 yolo

 
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Posted 21 February 2012 - 10:43 PM

I wish you the best too, Katie, and am only piping in to mention that there are some precautions with L-Glutamine and celiac disease, diagnosed or undiagnosed. That may be something you want to check out in conjunction with protecting your liver.

The gluten-free diet won't hurt you, and could very well help you very much.

The only thing I'm saying is that free advice is worth what you pay for it and you might want to shy away from taking L-Glutamine (because it gave me bad liver lab values after taking it daily for six months). That could just be me though. And I like Bea, really do, but she doesn't seen to consistently have back up documentation for why she's recommending something.

Wish you well, I have a niece named Katie, just looking after you. I'm not sure if this is a good source. but it made sense to me. http://www.livestron...liver-problems/ Celiac is an autoimmune disease.

Funny I bought the supplement only because my dear old dog responded so well to it...better than she did on steroids.

That's just my take on the subject, I could be wrong, but I feel strongly enough about it to write.

M


Hi Marilyn,

You bring up a good point. Most anything you take has to be taken with consideration and observation. Everyone is a little different so that needs to be respected.

I have been helped by L-Glutamine, as have many here. Some swear by it. A good friend of mine was recommended by his naturopath to use it regularly to help heal the lining of his intestines. My friend also has celiac.

However, besides advanced liver problems, if you have a tendency towards blood sugar problems, I have read its best not to use it too much. Especially if you have or tend towards diabetes. Here's a discussion of the pros and cons on that subject: http://www.livestron...e-for-diabetes/

I have low blood sugar, so I only use L-glutamine when I really need it, as in having been glutened. It helps shorten the time to heal and is very soothing so I think its a worthwhile thing to have in one's arsenal. But like you say, perhaps its not for everyone.

Nevertheless, if one does not have these problems, using L glutamine for a while should be OK. I do agree that using it continuously even for 2 months however is probably not wise without a doctor's supervision especially since we do have an autoimmune disease as you well noted.
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#13 KatieJo88

 
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Posted 22 February 2012 - 07:21 PM

I use Glutamine everyday. I lift weights and I found it helped with that first. I than ended up taking it more when I found out it helped with Celiacs. It does help me I think and I actually ran out of it so im in need of a bottle. As for my lab values, all are great. Except I am hypoglycemic also but I have found it only helps me. I am interested in the articles you both posted and am anxious to read them.
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Katie Jo <3

#14 yolo

 
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Posted 22 February 2012 - 10:38 PM

I use Glutamine everyday. I lift weights and I found it helped with that first. I than ended up taking it more when I found out it helped with Celiacs. It does help me I think and I actually ran out of it so im in need of a bottle. As for my lab values, all are great. Except I am hypoglycemic also but I have found it only helps me. I am interested in the articles you both posted and am anxious to read them.



I suggest you look at this old thread on the good and the bad concerning L-glutamine. It was a heads up for me too. Especially about it not being good for those with hypoglycemia. The main thing is (assuming they have their facts right) that it seems to be good for short term use, no more than two months at a time (at most--like I recalled somehow), or it will stop being good for one, much like other amino acids. Athletes get to use it a bit more --perhaps (?):

http://www.celiac.co...ne-good-or-bad/

No mention here however of possible problems with auto immune conditions, like the article I submitted above suggests. Maybe that research came later?? I will keep looking meanwhile... And ask my bf to help perhaps since he is good with researching medical stuff.

Meanwhile, here's an article on Buzzle that basically suggests too much of even a good thing is not that great. Moderation in all things would be the "buzz" word. Also avoid if liver or kidney problems (like me actually historically and always potentially), Reyes syndrome etc.:
http://www.buzzle.co...de-effects.html

No mention here at Buzzle of blood sugar issues being a no no either, but it was mentioned elsewhere by others--and down below in the naturopathic site I list.

Main thing though overall it is safe according the Wikipedea, so saith my dear bf. But I still am of the opinion that its best to go off it for a while now and then just to be on the safe side.

I still think its often great in an emergency like after one has been CC'd.

This online naturopath site seems to agree overall that its use is a mix of good and bad:
http://www.digitalna...eat/T73593.html

Be nice to actually see the evidence listed however... Probably one would have to sift through Pub Med for that.
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#15 xjrosie

 
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Posted 23 February 2012 - 11:49 AM

Hi Katie,

Don't feel silly. I went for years feeling like crap, always knowing something was wrong, but doctor's and their stupid tests could never find anything out of the ordinary. Since my daughters have been diagnosed, I have come to realize that gluten was also MY problem.

Yes, I was called a hypochondriac, I was told that I was just trying to get attention - both behind my back and to my face. Ex-friends, family members, coworkers - they all said the same thing.

Stick to your guns. Only YOU know how you feel and what makes you feel that way. Do what you have to do to take care of yourself.
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