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Fiddle-Faddle

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Fiddle-Faddle Community Regular

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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kenlove Rising Star

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????

jerseyangel Proficient

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 <_<

ShayFL Enthusiast

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?

VioletBlue Contributor

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

VioletBlue Contributor

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?

ShayFL Enthusiast

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.


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debmidge Rising Star

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.

  • 1 month later...
Gemini Experienced
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.

curlyfries Contributor

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.

kbtoyssni Contributor
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.

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