Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

cindylou7

Recommended Posts

cindylou7 Apprentice

I've read the posts of celiacs and other gluten sensitive souls and always thought everyone had it so much worse than I could imagine. I kind of had a "there but for the grace of God" attitude about the multitude of food issues many celiacs face. But I've come to realize that once you have some serious GI issues they don't just go away...sometimes they get worse!

I've been Gluten Free faithfully for quite some time and I am now finding other reactions and beginning a food diary/elimination diet to track it. So far the dairy sensitivity has worsened and I have been experiencing a reaction to soy too. I've also been having heart palpitations and shortness of breath (saw a cardiologist who assured me I was fine other than trivial valve regurgitation). Oh, and diverticulitis issues too, I'm beginning to believe all of my issues are just food related.

I have a new mantra...

I AM NOT CRAZY, OR DEPRESSED, OR A HYPOCHONDRIAC, I JUST HAVE FOOD ISSUES!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

(Hashimoto's) Thyroiditis can cause some of the symptoms you listed as your hormones swing from hyper to hypothyroidism. It could be worth checking out...beyond the food issues. :);)

Best wishes.

Link to comment
Share on other sites
cindylou7 Apprentice

(Hashimoto's) Thyroiditis can cause some of the symptoms you listed as your hormones swing from hyper to hypothyroidism. It could be worth checking out...beyond the food issues. :);)

Best wishes.

Thanks, I've had my thyroid checked and it was good, I've wondered about sjogren's because I've also been having swallowing, choking issues, but that could also be due to GERD...oh well...

Link to comment
Share on other sites
beachbirdie Contributor

Thanks, I've had my thyroid checked and it was good, I've wondered about sjogren's because I've also been having swallowing, choking issues, but that could also be due to GERD...oh well...

Forgive me for pushing this, but which thyroid tests did they do? Did you see the results?

Doctors often say they have checked the thyroid, but that usually means they tested TSH. If TSH is "normal" they don't look any further. Please, do check with your doc and find out if they ran Free T3, Free T4, and thyroid antibodies (anti-thyroglobulin known as TgAb and anti thyroid peroxidase, known as anti-TPO). You cannot know if you have autoimmune thyroid without those antibody tests, and autoimmune thyroid can definitely cause your symptoms.

As for the diverticulites, I've had two bouts with that. I'm finding that the soy-free, starch-free paleo/primal plan (with SCD variation so I can eat home-made yogurt!) is making a huge difference. I do not have abdominal issues as long as I stick to the plan.

Link to comment
Share on other sites
nvsmom Community Regular

Forgive me for pushing this, but which thyroid tests did they do? Did you see the results?

Doctors often say they have checked the thyroid, but that usually means they tested TSH. If TSH is "normal" they don't look any further. Please, do check with your doc and find out if they ran Free T3, Free T4, and thyroid antibodies (anti-thyroglobulin known as TgAb and anti thyroid peroxidase, known as anti-TPO). You cannot know if you have autoimmune thyroid without those antibody tests, and autoimmune thyroid can definitely cause your symptoms.

Beachbirdie is completely correct. I am almost positive that I've had thyroid issues for 15 years but the doctors would just check my TSH, which was a high normal or just above the range, and tell me I was normal.... I accepted that and didn't ask to see the specific lab results; that was a HUGE mistake on my part. My doctor finally "found" a thyroid problem when my TSH was triple the normal range, but my symptoms hadn't changed one iota from when my TSH was in the normal range... he would call it a coincidence. Sheesh. :rolleyes:

Those Free T4 and T3 labs should be in the upper half of the normal range, at about 65-80% of normal, so if the lab range was 0-10, you would ideally want to be at a 7. When my TSH was high, my Free T4 was at 10%, or in the above example it would have been a one... and I didn't feel very good.

Best wishes with it all. :)

Link to comment
Share on other sites
cindylou7 Apprentice

Beachbirdie is completely correct. I am almost positive that I've had thyroid issues for 15 years but the doctors would just check my TSH, which was a high normal or just above the range, and tell me I was normal.... I accepted that and didn't ask to see the specific lab results; that was a HUGE mistake on my part. My doctor finally "found" a thyroid problem when my TSH was triple the normal range, but my symptoms hadn't changed one iota from when my TSH was in the normal range... he would call it a coincidence. Sheesh. :rolleyes:

Those Free T4 and T3 labs should be in the upper half of the normal range, at about 65-80% of normal, so if the lab range was 0-10, you would ideally want to be at a 7. When my TSH was high, my Free T4 was at 10%, or in the above example it would have been a one... and I didn't feel very good.

Best wishes with it all. :)

Sorry i took a break from the forum for a bit...

My TSH was 2.28 and my Free T4 was .91

I spent a few days compiling all of my symptoms, organizing the patterns of highs and lows and went to the doc armed with my own "research". I figured that there had to be a reason for all of the things happening to me. They weren't just digestive but arthritic too and then there were the heart palps. He's running an ANA, RA, and Lupus panel as well as checking SED rate and another CBC.

Link to comment
Share on other sites
nvsmom Community Regular

Do you know your lab's ranges? A TSH of 2.28 is in the middle of my lab's range (0.2-6.0) but is on the high end if the range is 0.2-2.5... The ranges make a difference.

That's good the doctor is looking into rheumatic diseases too. Good luck with the tests.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



cindylou7 Apprentice

I don't know the ranges. It starts at .45 but the page cut off the end range. It didn't have a flag on it.

Thanks!

Link to comment
Share on other sites
beachbirdie Contributor

Sorry i took a break from the forum for a bit...

My TSH was 2.28 and my Free T4 was .91

I spent a few days compiling all of my symptoms, organizing the patterns of highs and lows and went to the doc armed with my own "research". I figured that there had to be a reason for all of the things happening to me. They weren't just digestive but arthritic too and then there were the heart palps. He's running an ANA, RA, and Lupus panel as well as checking SED rate and another CBC.

Ask them to test your Free T3. If your lab uses ranges like my lab, your Free T4 is on the lowish end. I can't function if my TSH is as high as yours though your mileage may vary. I'd be really suspicious of early hypothyroid here. Endocrinologists are increasingly accepting of new TSH recommendations which say 2.5 (some say 3.0) is the upper end of the range...with that in mind, you are definitely on your way.

Not to mention that many hypothyroid patients show symptoms long before their labs catch up to them. I had a heck of a time getting my doc to stop looking at me as a potential cardiac patient (palpitations, high blood pressure, high cholesterol, anxiety) and start thinking about thyroid. Turns out most everything that was wrong with me at the time WAS thyroid.

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...