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I am SO frustrated. This poor lady has what sounds to me like every symptom in the book.

Recent 35-pound weight loss

Intestinal issues

diabetes

thyroid disease

rheumatoid arthritis

and most recently, a supremely itchy rash all over her body.

Apparently, the doctors think she may have lupus, or that the rash is one associated with rheumatoid arthritis, whereas I think she is a walking poster child for celiac/gluten intolerance.

I've sent links to research, links to threads here on this board (including the Lyme one), my own experience with idiotic doctors who felt that they could rule out celiac--and she (and her doctors) apparently feel that they have ruled it out. To my knowledge they have not done bloodwork, nor an endoscopy, nor have they done a gluten-free diet trial.

Then again, after this long, I wouldn't be surprised if it were refractory sprue, so why bother.... :(

And WHY don't we have a crying icon????

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Crying icon would be good and maybe one icon hitting another with a hammer and caption that says "it feels so good when you stop",

Been trying to get my kids to get tested for the past 2 years. Even in their 30s they dont want to face that they are getting older and doing something now would save a lot of problems when older.

One of the expressions I use with farmers here is that you can bring a horse to water but cant make it drink -- sometimes you have to stick its head in it so it knows its water.

:D

I am SO frustrated. This poor lady has what sounds to me like every symptom in the book.

Recent 35-pound weight loss

Intestinal issues

diabetes

thyroid disease

rheumatoid arthritis

and most recently, a supremely itchy rash all over her body.

Apparently, the doctors think she may have lupus, or that the rash is one associated with rheumatoid arthritis, whereas I think she is a walking poster child for celiac/gluten intolerance.

I've sent links to research, links to threads here on this board (including the Lyme one), my own experience with idiotic doctors who felt that they could rule out celiac--and she (and her doctors) apparently feel that they have ruled it out. To my knowledge they have not done bloodwork, nor an endoscopy, nor have they done a gluten-free diet trial.

Then again, after this long, I wouldn't be surprised if it were refractory sprue, so why bother.... :(

And WHY don't we have a crying icon????


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Alison,

I'm really sorry :( This has to be one of the most frustrating things--to see such obvious symptoms in someone, just to have them dismiss the idea of Celiac out-of-hand.

I went through something similar with a family member last year--I did everthing I could and then had to stop beating my head against a brick wall. Yes, this is a first-degree relative <_<


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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My best friend has pre-diabetes IMO but will not go to the doctor to test it. Her mother had diabetes and died from complications. So I watch my dear friend get major hypoglycemia sometimes. She shovels candy in her face to make it stop. Up and down....up and down. Her poor pancreas is gonna give out. She wont even check it with my monitor. She doesnt want to know......

What can you do?


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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You cannot make anyone do anything. There is NO magic phrase or word that will make someone do something they're not ready or able to do. People change when they're ready to change.

They have a right to choose to believe in their doctors and to make their own choices in life no matter how much we may dislike their choices, think they're wrong, or think their deadly. The only life any of us gets to control ultimately is our own. You have to live your life and allow others to live theirs.

Or the alternative is to keep bugging your friends and family until they refuse to be around you. What have you gained then?

Violet


"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

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Low blood sugar, or hypoglycemia is not generally considered a classic symptom of diabetes. As a rule, the only time diabetics experience hypo is if they overdose on insulin or medication by not properly gaging their body's needs. Too much insulin eats up the blood sugar.

High blood sugar or hyperglycemia results from too little insulin and is a common symptom of diabetes.

Hypo is considered by some to be a symptom of Celiacs though.

My best friend has pre-diabetes IMO but will not go to the doctor to test it. Her mother had diabetes and died from complications. So I watch my dear friend get major hypoglycemia sometimes. She shovels candy in her face to make it stop. Up and down....up and down. Her poor pancreas is gonna give out. She wont even check it with my monitor. She doesnt want to know......

What can you do?


"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

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Many organs go through a hyper phase before conking out. For instance someone might have hyperthyroid and then go hypo. Or pancreas might be in overdrive trying to keep up with all the sugar someone eats, until it gives out. It happened to one of my grandmothers. She was always shaky and eating sweets and then she got dx diabetes. So it is true that hypoglycemia doesnt always lead to diabetes, but often it does. Esp. with a family history. But anyway, it doesnt matter, it is her deal.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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My husband's sister appears to have celiac and won't be tested and said that she'd rather

die than eat gluten free like he does....well she might get her wish.

My thyroid when hyper before it "burned" out - I lost all my excess weight and thought WOW! finally a size 8!

Then learned I had a "nodule" on thyroid and it gland stopped working and I gained what I lost and MORE!

That's why a "sudden" weight loss has to be checked out. Same thing happened last year with my

gallbladder (but I had other symptoms with gallbladder). That's why I was upset with my husband's

doctors 35 years ago when he first got ill because he lost so much weight in so little time and none

of the doctors he went to were concerned about it at all. A healthy 27 year old male losing over 30

lbs. w/diarrhea and the gastros didn't bat an eye.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I am SO frustrated. This poor lady has what sounds to me like every symptom in the book.

Recent 35-pound weight loss

Intestinal issues

diabetes

thyroid disease

rheumatoid arthritis

and most recently, a supremely itchy rash all over her body.

Apparently, the doctors think she may have lupus, or that the rash is one associated with rheumatoid arthritis, whereas I think she is a walking poster child for celiac/gluten intolerance.

I've sent links to research, links to threads here on this board (including the Lyme one), my own experience with idiotic doctors who felt that they could rule out celiac--and she (and her doctors) apparently feel that they have ruled it out. To my knowledge they have not done bloodwork, nor an endoscopy, nor have they done a gluten-free diet trial.

Then again, after this long, I wouldn't be surprised if it were refractory sprue, so why bother.... :(

And WHY don't we have a crying icon????

My niece (sister's child) has all the symptoms of Celiac also and she has been told, firmly, mind you, that she does NOT have celiac disease....it's lupus. I think all of those clueless doctors have this idea that those type of symptoms point to individual autoimmune problems and when a patient tests negative for celiac disease, they discount it totally and entirely forever. Personally, I think she has celiac disease and doesn't have lupus....at least not yet. They are still in that mindset that nothing is connected and treat each disease as a separate entity. She also tested positive for Sjogren's but they discounted that and blamed the test result on her supposed lupus.

I am amazed at their lack of common sense. When I looked at her test results, I looked at my sister and told her that her daughter does indeed have Sjogren's (I have it also) and she may not have lupus at all because the symptoms of lupus mimic celiac disease. But do they listen? :angry:

In the meantime, her daughter cannot hold a job down because her health is so bad and she will be living at home forever, without a life, because she refuses to go gluten-free. She lives on fast food and doesn't cook so we can all see how this will end up. I have come to the point where I have pretty much cut out my family, except for holidays, because they drive me nuts. About 70% of them have symptoms and they ignore me about it so I have officially given up. I just can't hang around with ignorance and don't want to hear their problems anymore....especially when you can see so plainly what the problem is. Very difficult, I know, but I have learned just how deep denial can go and it's ugly.

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You can not imagine how much people like this upset me, I just have to vent for a moment.

When I was a kid, my mother d*** near killed herself because she didn't go to the hospital until 9 days AFTER her appendix burst......she became a medical miracle. Then, 8 years ago, she was diagnosed with colon cancer, but it was so far along that she only lived 3 months...........classic *head in the sand* mentallity. These people need to wake up! I firmly believe that my mother was a celiac, but she was too proud and stubborn to believe that anything was wrong.................yeah, well look what it got her :angry:

People need to realize that if they continue to ignore their issues, the only thing that is going to make it go away is a funeral!

Sorry, but I just passed the anniversary of my mom's death, and this just hit a nerve.


~~Lisa~~

"The greater the obstacle, the more glory in overcoming it."--Moliere

"I may not have gone where I intended to go, but I think I have ended up where I needed to be."--Douglas Adams

Friends may come and go but Sillies are Forever!!!!!!!--Amanda

_________________

gluten-free since 1/08

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You can not imagine how much people like this upset me, I just have to vent for a moment.

When I was a kid, my mother d*** near killed herself because she didn't go to the hospital until 9 days AFTER her appendix burst......she became a medical miracle. Then, 8 years ago, she was diagnosed with colon cancer, but it was so far along that she only lived 3 months...........classic *head in the sand* mentallity. These people need to wake up! I firmly believe that my mother was a celiac, but she was too proud and stubborn to believe that anything was wrong.................yeah, well look what it got her :angry:

People need to realize that if they continue to ignore their issues, the only thing that is going to make it go away is a funeral!

Sorry, but I just passed the anniversary of my mom's death, and this just hit a nerve.

I'm sorry to hear about your mother. I wish all the people who won't get tested or try the diet because they could NEVER live without bread would realize they are not the only ones affected by that decision. They may feel rotten all the time, but the rest of the family also has to indirectly deal with the consequences of their bad health.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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