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 Our Content
    eNewsletter
    Donate

Am I In The Right Place?

justlisa

Recommended Posts

justlisa Apprentice
justlisa
Posted

Tired...sick...scared...

I'm just going to list what's wrong with me:

In 2004, I suffered from hives...lasted about a year or so... The docs couldn't find the cause. I used benadryl but, when that didn't work I would be put on steroids... The hives disappeared one day and have never returned.

I noticed "aches and pains" (mostly when I really pushed myself) and fatigue...but I just pushed through it.

Please note that I only add the two items above in hindsight (as I only now wish to see if there could be a connection).

In 2007, I started experiencing a pain in the bottom of my foot...trouble walking on it. It would come and go.

Around the same time period I started experiencing "pressure", "anxiety"...whatever you want to call it...and was diagnosed with high blood pressure.

The pain in my foot as sporadic and "livable" up to that point...but then started having pains elsewhere. Blood test for rheumatoid factor was positive. Referred to a rheumatologist. For about 4 or 5 years, I have been on enbrel then humira...along with steroid courses. I've not seen any real relief for this... I would always question the rheumatoid arthritis dx because I didn't seem to have the same symptoms as I read associated with RA...but I was told that " not everyone's the same".

Also, during this time I started having heart palpitations and was put on atenolol.

Approx a year ago, my rheumatologist noticed something in my gait and referred me to a neuro. She did an mri and determined (using a previous mri) that my cerebellum had "shrunk some". That i have "cerebellar ataxia". I was told my condition was progressive would worsen.

My condition has "worsened". I have great difficulty walking unaided (by walls, furnishings, people, etc). I seem to do okay driving locally...at "city speeds" but, have a lot of discomfort (and no longer do it) on highways (vertigo, etc). I, also, experience occasional tremors in my left arm...along with significant "weakness" in my limbs...

I can't tell you how many times (every time I go) I've cried in the doctors' office...

At my GP's office today I asked about gluten intolerance/celiac. My GP chuckled (can I just say how THAT made me feel?!) but said we'd draw some blood and test but he highly doubted my symptoms were caused by celiac because I would have abdominal paim, vomiting, diarrhea, etc). I don't have those symptoms...true...but I've always had "issues" (bloating, discomfort, irregularity, etc, etc).

I started gluten-free today...don't know if it will help...what can it hurt?

Oh and...I am a 44 yr old mom (who can't carry the laundry up and down the stairs).

Any advice is welcome.

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

Celiac.com Sponsor (A8-M):


Teri Lou Apprentice
Teri Lou
Posted

So sorry to hear how poorly you are feeling. Can definitely sympathize with you as I have lupus, and went through a lot of the same things you are. I also suggested a gluten intolerance to the dr and was pooh poohed by the MD, however started gluten free anyway and it made a HUGE difference in how I felt. Then accidentally got glutened and developed DH rash which was tested and so ended up with the Celiac diagnosis through the back door so to speak. IF your testing comes back negative I would recommend trying gluten free it shouldn't hurt anything but might make a huge difference for you. I know it did for me. I honestly never thought I would feel this good again.

Good luck. Hang in there and post here if you need support :)

beachbirdie Contributor
beachbirdie
Posted

Tired...sick...scared...

I can't tell you how many times (every time I go) I've cried in the doctors' office...

At my GP's office today I asked about gluten intolerance/celiac. My GP chuckled (can I just say how THAT made me feel?!) but said we'd draw some blood and test but he highly doubted my symptoms were caused by celiac because I would have abdominal paim, vomiting, diarrhea, etc). I don't have those symptoms...true...but I've always had "issues" (bloating, discomfort, irregularity, etc, etc).

I started gluten-free today...don't know if it will help...what can it hurt?

Oh and...I am a 44 yr old mom (who can't carry the laundry up and down the stairs).

Any advice is welcome.

Hi and welcome. You have found a very good place to get support and information. I think it is one of the best on the 'net. There are a lot of people here with a variety of experiences and conditions, people who have struggled for answers sometimes for decades. Glad you found us. I am so sorry you are having such a difficult time and that you have felt so poorly for so long. Forgive me for getting personal, I hardly know you, but {{{{hugs}}}} to you.

Your doc doesn't know much about celiac if he still thinks it always presents with abdominal symptoms. It does not. In fact, (and this is not supported by any literature) from stuff I've been reading, it sounds like more people might actually present with very few of the "classic" symptoms. I'm one of them.

Be careful about how he interprets your tests, and be sure to check up on him to make sure he does the full array of tests. Testing for this disease is NOT that great, and there is about a 20-30% rate of false negatives. Meaning, 20-30% of people who actually have the disease will have negative blood work.

One of the first things you'll want to do is get your lab test results and read them for yourself. Docs too often say "you're fine" when you might not be fine for YOU. If you share the results here, lots of people will pitch in and give you ideas about it.

Now...question...have they given your thyroid a good going over? That can also cause some of the symptoms you have. I had a lot of arthritis-type pain when my thyroid was bonkers, I'm guessing now it was inflammation from the high level of antibodies in my blood. Your foot pain sounds like plantar fasciitis, a VERY common companion to thyroid problems. Make sure they test your thyroid hormones and not just TSH (a pituitary hormone). You need a Free T3 and Free T4.

Hopefully others will be along for you soon!

justlisa Apprentice
justlisa
Posted
  • Author

Teri, thanks for the understanding and support.

Beachbirdie, I had blood drawn for my TSH, yesterday, as well. I will ask about the others. The problem with the pain is that it "moves" around my body...not in just one place...not just a foot...and it can be flared up for a few days or gone by the end of one.

Thanks for the info...and the hugs...

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,930
    • Most Online (within 30 mins)
      7,748
    Sheila Johnson
    Newest Member
    Sheila Johnson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Her result for the TTG Ab (IgA) was 19. Lab range 0.0 - 0.7. U/ml. 
    • trents
      Should I be screened for celiac disease?

      By trents · Posted

      TTG would refer to a blood antibody test. Not valid if you are already eating gluten free or mostly so. DQH would refer to a genetic test to see if you possess either or both of the two genes that have been connected most strongly to developing active celiac disease. The genetic test is more of a rule out measure than a diagnostic test as about 40% of the general population have one or both of those genes but only about 1% of the general population develops active celiac disease. If you don't have the genes but gluten causes you issues then the conclusion is NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. So, the genetic testing helps with a differential diagnosis. I don't know about the 2P. 2 Pairs of genes?
    • Scott Adams
      gluten-free Canada finds

      By Scott Adams · Posted

      Tell him to get me a case...just kidding! I wonder why they are not labelled gluten-free here in the USA? They don't have gluten ingredients.
    • Pamela Kay
      Diagnosed gluten allergy but not Celiac

      By Pamela Kay · Posted

      Glad this helped. There are lots of alternative breads out there, so someone has likely made some sort of paleo bread with no grain. And if you bake, experiment with some of the alternative flours to see what you can come up with. If you commit to the gluten-free diet 100%, you may want to do a bit of research on some of the tricker aspects of getting gluten out of your diet, such as cross contamination in the home kitchen (pots and pans, cutting boards, toaster, airborne flour). Don't feel you have to do everything at once, or let this overwhelm you. I've always said that going gluten free is a process, not a moment. The reason I mention this is that, if you think you are gluten-free, but still having symptoms, you may realize that even minute amounts of gluten cause a reaction for a while. Let me know if you have any questions.  Pam
    • Scott Adams
      Should I be screened for celiac disease?

      By Scott Adams · Posted

      The doctor was correct--if you are gluten-free the blood panel for celiac disease will not work, you would need to go on gluten challenge in order to be tested. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...