Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Vent


Fiddle-Faddle

Recommended Posts

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????


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd posted a topic in Related Issues & Disorders
      0

      Basic metabolic panel results - more flags

    2. - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    5. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,317
    • Most Online (within 30 mins)
      7,748

    RickT
    Newest Member
    RickT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.