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Doctor's Just Don't Understand

Green Eyes

By Green Eyes
in Doctors

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Green Eyes Rookie
Green Eyes
Posted

Okay, so in the beginning I "thought" I had no symptoms of celiac. Boy was I wrong. Although I did not have any GI issues (call it a gut of steel) I'm now realizing my other issues are related to my celiac.

I have really tried to educate myself with lots of reading and this group of people has provided more information than any doctor can give me. I'm realizing that I have to be the one to connect the dots.

I went to see a neurologist yesterday because of pain in my left leg. He has determined it is probably my sciatic nerve. When I asked if it was related to my celiac he said "no." But he sent me to get vitamin levels checked. When I got home and researched I realized vitamin deficiency can cause pain in the sciatic nerve which I know is related to my celiac. But I had to do it on my own. It is just frustrating that not only the general public doesn't have a clue about celiac but doctors as well.

Jennifer

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ShayFL Enthusiast
ShayFL
Posted

I dont know how any doctor can say something isnt connected. Every cell in our body is connected in some way. If one system is off, the rest of the body suffers. If a disease causes deficiency, then that deficiency can cause other symptoms. And those symptoms can cause anxiety and depression. And on and on it goes.....it is like a domino effect.

sbj Rookie
sbj
Posted

I went to see a neurologist yesterday because of pain in my left leg. He has determined it is probably my sciatic nerve. When I asked if it was related to my celiac he said "no."

Hey Green eyes - I can sympathize with doctors not always being correct. In their defense they are probably just going with the usual causes. Your doctor might be right.

In the case of sciatica and leg pain I can offer my own personal experience. I have pain going down the right leg starting from my butt. In my case it is not due to celiac but it is due to my degenerative disc disease (DDD). DDD is very common especially as we get on in years (I'm 45 yrs old). You can verify lower back issues with a CT scan. You can also see a physical therapist for exercises and help with your sciatic pain but I'm afraid there's little you can do to stop DDD entirely.

I guess what I'm saying is that your leg pain MIGHT be due to celiac. But it could also be due to exactly what your doctor says. A CT scan or x-ray of your lower back might offer some clues. And physical therapy might also help to diagnose. We should all (including doctors) be open-minded. Nobody knows everything. Best of luck finding help with your issues.

gfpaperdoll Rookie
gfpaperdoll
Posted

Oh wow, I had forgotten about my problems with Sciatica in my left leg. I was running & the pain was awful, they always laughed because I would have to run 3 miles to get rid of the pain before I could run with the group. a doctor friend of mine tried everything to get rid of it. He never did figure it out. He had me xrayed & I had no structure problems, I had slow motion films done of me running (running conventions/clinics) no problems, he made sure my shoes fit right & switched me to New Balance. That didn't work. He finally guessed that I had a muscle growing thru a nerve. That was wrong also, because when I gave up wheat 15 years ago, it went away.

I hope yours goes away soon also.

Green Eyes Rookie
Green Eyes
Posted
  • Author

I'm certain I do not have the DDD. I've had a ct scan, mri, and x-rays - nothing shows.

Does anyone see a chiropractor? My parents live and breathe by one and actually have had good results. After discussing my doctors visit with Mom she suggested her chiropractor. She was even telling me he works with other things relating to the spine. I told her I would go to him if he knew anything about celiac or was willing to do the research. Trust me, she will jump on that.

I guess I'm just wanting some guidance from a professional or at least someone to hold my hand and listen to what I have to say. I'm not saying the other doctors are bad, just that this celiac stuff is unknown stuff (at least in my area of the world).

Jennifer

Green Eyes Rookie
Green Eyes
Posted
  • Author

I am ready to scream!!! More disappointment from the doctors.

I was initially very impressed with my GI doctor. She even gave me papers to have labwork done in 3 months after being gluten free. I when to the lab just as planned and obviously didn't have a clue why I went to get blood work. I thought it was to have the test run about to see what my numbers were for celiac. It wasn't. It was to check ferrin and iron levels. That's all!!! I called the office and asked to have the celiac test run again and was basically told I didn't need it. I tried to explain that I am not reacting (no GI symptoms) to trace amounts of gluten (know I had it, but it was totally accidential) and would like something to fall back on to make sure I'm on the right track. It was then recommended to me to follow a gluten free diet more strictly (like I'm not now).

I'm needing some guidance here. Should I be happy I've found out the issues and deal with it the best I can, or do I take charge of my life and continue to looking for a doctor that will work with me.

At this point I believe my celiac has caused 3 root canals, 4 caps (unexplained sensitive teeth), hysterectomy, sciatic nerve pain, tired achy legs and insomnia. This list could probably go on, but these are the items I feel I have directly related to side effects of celiac. Am I crazy?

Jennifer

one more mile Contributor
one more mile
Posted

sadly stories like this are common. The more I am gluten-free the more I am finding things that were related to it.

I knew of a man that was going to an eye doctor, an sinus doctor, a back doctor and one for his lungs.

Finely the light went on for the lung doctor and he ordered a test and found out the poor guy had a brain tumor.

The guy is fine today, needs only reading glasses, back is better and his sinus and migraines are all better.

He nearly died. I just was half dead for years till I figured out that I need to be gluten-free.

good for you for making that connection.

I just found out that even tough I take 166% of the recommended amount of vitamin D every day for three years I test at a low average amount.

At this point I handle the gluten-free on my own. My endocrinologist does not understand the gluten but he shrugs and you lost 12 pounds(I am heavy) and you are not sleeping all day. Keep doing what is working.

Jennifer, you are not crazy but I have found that for me taking charge of my own life works much better.

I still have sciatic pain from time to time. I bought an Igallop from brookstone and jump on it for a few minutes and it seems to shake the pain out of me. Five minutes and it is gone for the day or the week. Not at all like before.

One more mile

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Green Eyes Rookie
Green Eyes
Posted
  • Author

Thanks One More Mile and appreciate your words of encouragement. I've already checked out the Igallop, it is certainly a consideration. I have found that working out on the cross trainer every other day helps, but hard to get to the gym just because I'm having pain. Maybe that is a direction for me as well.

Is there certain stretches you can do in the morning or night just to relieve the pain?

After having another visit with the neurologist and an EMG (now that sucker hurts), he says he doesn't see a problem. I'm just not willing to give up and I'm going to continue to pursue optimum health, hoping I can find a doctor to help me.

Jennifer

  • 2 weeks later...
Green Eyes Rookie
Green Eyes
Posted
  • Author

I did it, I finally did it!!! I have finally found out what is going on with me and a professional that will work with me. After much diligence, I have found a chiropractor that is very imformed about celiac (he won me over) and has found the source of my pain.

Okay, I just wasn't sure about going to a chiropractor but I had tried everything else and I was getting desperate. This wonderful, caring chiropractor is AWESOME!!! My entire spine is misaligned and I have a twisted pelvis. After one adjustment I have already lost my leg pain. I have a very long way to go and drive 40 mintues (one way) just to see him 3 times a week but he's wiling to help me.

The precious man looked me square in the eye and assured me I wasn't crazy!!

Jennifer

sbj Rookie
sbj
Posted

Jennifer - that's great! Congratulations. No medical professional should ever discount your pain as being in your head!

Does this mean that celiac caused a misaligned spine? or does it mean that the sciatica was not related to celiac?

Green Eyes Rookie
Green Eyes
Posted
  • Author

I'm not really sure if the celiac is related to the actual misalignment, but I believe the lack of nutrients getting to my nerve cells aided in the pain I was having.

The most wonderful new is how informed the chiropractor is about the celiac. I feel like he can be someone I can ask questions and get a reasonable answer. That just means a lot.

I'm just very pleased I'm finally making progress!!

Jennifer

DarkIvy Explorer
DarkIvy
Posted
I'm not really sure if the celiac is related to the actual misalignment, but I believe the lack of nutrients getting to my nerve cells aided in the pain I was having.

The most wonderful new is how informed the chiropractor is about the celiac. I feel like he can be someone I can ask questions and get a reasonable answer. That just means a lot.

I'm just very pleased I'm finally making progress!!

Jennifer

That's huge! I'm glad you found someone who is caring and GETS it. I think that's very rare!

Aren't chiropractors awesome? I've seen several of them over the years and I always find them to be some of the most open minded medical professionals out there, and usually their concern is genuine and they have the most holistic, practical, best advice for just about everything.

I should really start seeing one again...

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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