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 Dr. Said "i Don't Know What Is Wrong With You"


chippersmom

Recommended Posts

chippersmom Newbie

My doctor shrugged his shoulders and said "I don't know what is wrong with you" He sent me to a rumatologist and he said more or less the same. The only thing my blood work showed was an elevated sed,inflamation, rate of 61. My symptons were sudden and dramatic. One afternoon after a meeting, I could hardly stand. I made my way home and later the pain in my leg and gluts on the left side was so bad that I could not walk. With help to get to the bathroom I was passing out from the pain. After blood work and many tests the Dr had no diagnosis and he just put me on antinflammitory medication. In the weeks that followed the painful areas moved from hands, knees, neck and here and there with the most consistant place being my left leg and glutes. After about six months on antiinflamitory drugs I went to an acupuncturist for help. I got immediate relief after her treatment and she told me to follow the "Eat 4 your type diet". She also took me off of Prozac which I had taken for years for anxiety. ( A lump in my throat and hair loss) My blood type is O+ so I followed a no wheat, potato, and low sugar diet. The diet restricts many other things that were not in our ancestors hunter gatherer diet. Now several years later If I eat either wheat, potatoes or sugar I get pain in my left side even before I get up from the table. I just want to know what is wrong so that I can take proper care of myself and know wht to expect in the future. I was diognosed with irritable bowel at 26 and I have had bouts on and off throughout my life. I am now 58. Just before these symptons started I had had a terrible time of Ibf. I am not on any perscription medication. Please advise.


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

The widespread pain is probably the most significant and life changing symptom I've suffered. It's my muscles and joints and I've been run through tests for all sorts of things until my doctor slapped a fibromyalgia label on me and sent me home with a prescription that wasn't particularly helpful. My initial blood work several years ago also showed some inflammation although they said it wasn't severely elevated.

I've read lots of posts and profiles that show people were diagnosed with IBS before eventually getting a celiac diagnosis. I not into a lot of the conspiracy theories with medicine, but I wouldn't be shocked if every case of IBS and maybe even fibromyalgia could be linked to food intolerances, celiac or similar issues with what we eat.

I'm hardly an expert and all of this is very new to me but I've been making every effort to absorb whatever information I can find. What jumps out at me specifically is that after giving up some foods for a time you can now pinpoint some that make you sick. If a particular food causes pain I'd say just avoid it. Almost everyone here recommends a food diary so you can track what you eat and how you feel to see what is causing you to be sick. (I have yet to keep mine properly updated.) You may never get a doctor to actually say you have celiac, especially since you'd have to spend some time eating wheat (which if it is celiac isn't really any better than eating poison) just to hope that maybe a test would come back positive. A negative test doesn't mean a thing.

My guess is that you have a variety of food intolerences since more than just wheat causes you pain when you eat. I don't feel like I even need to climb a tree let alone go out on a limb to say that. Others are more experienced with how to introduce a single food properly to test your reaction and may be able to shed more light there on how to narrow down exactly what to eliminate from your diet. I hope your feeling better soon, best of luck sorting out your diet.

zeeclass6 Explorer

Have you had tests for thyroid disease and auto-immune thyroid problems?

Some of the problems you describe are thyroid symptoms.

Get the following tests done:

TSH

Total T4

Free T3

Free T4

Reverse T3

BOTH sets of Thyroid antibodies (very important)

An ANA test for other auto-immune conditions would also not be a bad idea.

You should also get a full metabolic panel, lipid panel, and CBC if you haven't had those already.

BTW, I hope you didn't go off Prozac "cold turkey." You need to SLOWLY titrate off that stuff over the course of a few months, or you could have very nasty withdrawal symptoms. I know this from personal experience.

ciamarie Rookie

I followed the 'blood type' (ER4YT) diet, also O+ for several years after I discovered I had a problem with wheat. But since some other gluten grains (spelt, rye) were rated 'neutral' I continued to eat them, plus very occasionally having wheat, until just a little over 3 months ago. My suggestion would be to go totally gluten-free, and see if that makes a difference.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,585
    • Most Online (within 30 mins)
      7,748

    Josephine Minaudo
    Newest Member
    Josephine Minaudo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.