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Am I In The Right Place?

justlisa

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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.

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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...

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    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
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      By trents · Posted

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      Shingles - Could It Be Related to Gluten/ Celiac

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