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

3 Years Dx'd And Still Feel Like Crap! Please Help!1


Joni63

Recommended Posts

Joni63 Collaborator

Hi,

I used to post on this site regularly and all of your support was wonderful! I am once again in need of some advice/direction.

History: dx'd August 1st, 2007 w/ celiac disease

Know that I am lactose intolerant and caffeine sensitive. Kept eating and drinking them both despite several times taking them out of my diet and feeling better. Now, when I try to add any dairy in I get severe stomach pains and 'd' the next day. I have pretty much removed them, just test it once in a while and know now that it is not good for me.

Constantly am monitored by nutritionist for vitamin levels, thyroid and urine. My iron was low, but is now too high. My vitamin D is still low, but improving. I take about 30 vitamins/herbs a day and when I stick to the regimen, I do feel better. I am committed to continue them this time.

My TSH is currently at 2.99 - I feel so tired and unmotivated. I'm going to get retested in 6 weeks with free t3, t4, tsh, and dhea (which runs high) She said if it is still high then, I will probably need to go on synthroid or armour thyroid for the rest of my life. Can too little salt in the diet cause this? Is there anything I can do to prevent going on meds?

I also have high epstein barr numbers and if I do too much, I literally crash. It's like chronic fatigue, takes months to get back to normal. I have to say when I build up exercise very slowly I start to get a lot more energy.

I started weight lifting and exercising in March and have felt horrible ever since. My goal is to train for and complete a sprint triathlon. I'm sure I overdid it this time.

Where do I start and how am I ever going to be able to accomplish that goal???

Any help/suggestions/advice would be appreciated.

I pretty much have felt like crying a lot lately and I am usually optimistic. I just feel like there is always another problem to deal with.

Joni


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I pretty much have felt like crying a lot lately and I am usually optimistic. I just feel like there is always another problem to deal with.

Joni

Oh, Joni. That's your low thyroid. I feel so bad for you because mine is out of whack the past few weeks and I've been feeling exactly the same way.

As well as the fatigue, hypothyroidism causes depression and lots of other problems. Cold hands, dry hair and skin, weight gain, sluggish metabolism. Many people with celiac end up hypothyroid and yes, you will probably have to go on synthroid. The one thing that can looked at as far a diet is iodine, but iodine deficiency is relatively rare and you would probably have some goiter. Most celiacs with low thyroid have autoimmunity and unfortunately it tends to get progressively worse and worse.

The good news is that you will feel much better on thyroid supplements, and your body will be a little more resilient for exercise. The synthroid really does "cure" hypothyroidism and it has no side effects once your doctor gets you on the right amount. Your low motivation and mild depression should clear up fairly quickly. To be honest, six weeks seems like too long to wait. Does your doctor know you're having the mental symptoms of thyroid disease?

It sounds like you'll have to be kind to your body and increase your level of workouts much more gradually than some athletes. You might set the goal for your triathlon for next summer or even in two years, and then lay out a very gradual plan for training. Sometimes around here we have to take baby steps when we'd rather leap but we still get there. :)

bluebonnet Explorer

sounds like a slug of a thyroid to me. your thyroid controls everything! i was diagnosed with hypothyroid back in 1992 because i had all those symptoms + some. i would definitely try for sooner than 6 weeks. unfortunately nothing you do on your own will help your thyroid function properly if it is in fact hypo. you will feel better once you get the meds dosed at the right amount. a pill a day isn't all that terrible. you may want to try different brands too. its preference of course but synthroid didn't work all that great for me. after almost 20 years of taking it i think i've tried most of them! i hope you feel better soon. :)

Joni63 Collaborator

Thank you both for your replies. I feel a little bit better the last 2 days. I'm trying the blood type diet and seeing if that will help. I realize it's not the worst thing to take meds if it makes me feel so much better. I will do what I have to!

  • 1 month later...
Joni63 Collaborator

Hi,

I just wanted to let you know I got the lab work back and my thyroid is ok now. I didn't ask her what the numbers were, but I did completely stop caffeine and dairy and feel so much better! I'm trying to get lots of rest and I've made some huge gains in my training. I strongly believe I am allergic to caffeine. : )

Joni

dilettantesteph Collaborator

I trained last year for the sprint triathlon that I did this summer. I found symptoms returning when I pushed myself with exercise. I think that it made me sensitive to lower levels of gluten. Or maybe, it just made me aware of low level glutening. Anyways, I cleaned up my diet by reducing processed foods and got so that I could train without feeling symptoms. I had to get rid of my delicious instant espresso coffee. What I do instead is buy organic whole coffee beans and wash them carefully with soap, dry and grind. Than I don't react to the coffee. That might work for you, or you might just have a problem with coffee.

Skylark Collaborator

Hi,

I just wanted to let you know I got the lab work back and my thyroid is ok now. I didn't ask her what the numbers were, but I did completely stop caffeine and dairy and feel so much better! I'm trying to get lots of rest and I've made some huge gains in my training. I strongly believe I am allergic to caffeine. : )

Joni

I'm glad to hear you're feeling better!


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



Celiac.com Sponsor (A8-M):



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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,019
    • Most Online (within 30 mins)
      7,748

    Nancy Adams
    Newest Member
    Nancy Adams
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.