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

My New Problem.....

kimis

By kimis
in Related Issues & Disorders

Recommended Posts

kimis Collaborator
kimis
Posted

When did it all start? When I got diagnosed with Celiac Disease! The gluten free diet is a wonderful form of treatment, but two months after I started it...the problems came rolling in! My cheif complaint at first was a horrible headache that was deep behind my eyes. The first month of the headache was horrible. The doctors could not find anything wrong and family members were convinced I was creating these headaches all by myself. So, after my second brain MRI (this time with contrast) A pituitary microadenoma was found. YES! AN ANSWER TO MY HEADACHES! NO! NO! NO! The doctors (all 4 of them, my this is getting expensive) said my tumor was not causing my headaches and it is an incidental little nothing.

Okay, I have had all the blood tests, two MRIs, I must be crazy or suffering gluten withdrawl. So I just dealt with it, put a smile on my face, and went on living like normal (if crying yourself to sleep is normal).

Over the next few months I was gaining weight (I exersize and eat mostly healthfully), tierd all the time, losing hair, sad all the time,ect. Then I read a few posts on here about hypothyroid and rushed to my Dr. to get tested. After he argued that my thyroid was checked a few months back...he gave me the test and it came back posotive. I will get an ultrasound next week and then go from there.

I do not know yet what type of hypothyroidism I have. I don't know if my tumor is growing and effecting my thyroid, or if this is another autoimmune diseas. Hopefully...I will take the pills they want me to take....and my daughter will get her mother back. I'm really just sick to death about this never ending prosses of trying to feel better. It's like I have to be my own Dr. and tell my real Dr what to test me for. Why haven't we invented a machine that scans your entire body and finds all the problems? I guess all I can do now is just hope and pray that this will be the end. Thanks for listening to my sob story...I would love to know if you think I am missing something obvious.

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

Celiac.com Sponsor (A8-M):


Mother of Jibril Enthusiast
Mother of Jibril
Posted

Two thoughts...

1. Your symptoms do sound like hypothyroidism. I think it's great that you asked to be tested!

2. Did they check for thyroid antibodies? (TPO, TgAb) The pituitary gland produces TSH (thyroid stimulating hormone), so I would be worried that your TSH does not accurately reflect how your thyroid is functioning. If you don't have any thyroid antibodies that's good news... then the pituitary gland is your main problem. If you do have antibodies, then you should try to find a doctor who will treat you based on symptoms.

You might want to get on this website: Open Original Shared Link and ask for help. Things get a lot more complicated when the problem is not just with your thyroid.

  • 4 weeks later...
RollingAlong Explorer
RollingAlong
Posted

The Pituitary Network Association www.pituitary.org has a lot of helpful info and they feel that these sorts of issues are often handled incorrectly. "Incidental little nothing." is something they would probably disagree with unless you've consulted a pituitary endocrinologist, a true specialist.

If the tumor is affecting your thyroid, you can adjust the meds forever and never get it right. And those little tumors can have big effects.

Very best of luck with it; I admire your persistence.

Hankster Newbie
Hankster
Posted
When did it all start? When I got diagnosed with Celiac Disease! The gluten free diet is a wonderful form of treatment, but two months after I started it...the problems came rolling in! My cheif complaint at first was a horrible headache that was deep behind my eyes. The first month of the headache was horrible. The doctors could not find anything wrong and family members were convinced I was creating these headaches all by myself. So, after my second brain MRI (this time with contrast) A pituitary microadenoma was found. YES! AN ANSWER TO MY HEADACHES! NO! NO! NO! The doctors (all 4 of them, my this is getting expensive) said my tumor was not causing my headaches and it is an incidental little nothing.

Okay, I have had all the blood tests, two MRIs, I must be crazy or suffering gluten withdrawl. So I just dealt with it, put a smile on my face, and went on living like normal (if crying yourself to sleep is normal).

Over the next few months I was gaining weight (I exersize and eat mostly healthfully), tierd all the time, losing hair, sad all the time,ect. Then I read a few posts on here about hypothyroid and rushed to my Dr. to get tested. After he argued that my thyroid was checked a few months back...he gave me the test and it came back posotive. I will get an ultrasound next week and then go from there.

I do not know yet what type of hypothyroidism I have. I don't know if my tumor is growing and effecting my thyroid, or if this is another autoimmune diseas. Hopefully...I will take the pills they want me to take....and my daughter will get her mother back. I'm really just sick to death about this never ending prosses of trying to feel better. It's like I have to be my own Dr. and tell my real Dr what to test me for. Why haven't we invented a machine that scans your entire body and finds all the problems? I guess all I can do now is just hope and pray that this will be the end. Thanks for listening to my sob story...I would love to know if you think I am missing something obvious.

This is the place for replies. I would say to you that, in general, the more background and testing/diagnostic info, the better. I have received a provisional dx for Celiac about 10 days ago and have stuck pretty much to no wheat/barley or rye [i really love rye breads and GrapeNuts!!!]. Have gained about two pounds since then. I was diagnosed with hypothroidism at age 40/41 (20 plus years ago) and my meds for that have made a tremendous difference in QOL. Celiac is associated with hypothyroidism, as you may know, so why it took this long to diagnose is too bad. Definite symptoms for at least 10 years, maybe longer. Now I am also wanting to chase down any possible link (causal or associated) with the 'idiopathic' neuropathy' I've had for about five years. So, I would say to you, "Don't Give Up" and make sure you have competent specialists who are willing and able to treat you in a whole body way.

needtobebetter Apprentice
needtobebetter
Posted

What about Cushings ...do you have moon face, hump, big belly, anxiety, trouble sleeping, stretch marks..??

Dont want to put something else in your mind to worry you but people really get the run around from nhs with that I thought i had it and when you go onto cushings-support.com they all have seen loads of endos..

Mandyxx

Archived

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

Go to topic listing

  • 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. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir.
    2. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    3. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    5. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,360
    • Most Online (within 30 mins)
      7,748
    Known1
    Newest Member
    Known1
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
×
×
  • 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.