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Just Flat Out Need Some Help

TTNOGluten

By TTNOGluten
in Coping with Celiac Disease

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TTNOGluten Explorer
TTNOGluten
Posted

I have posted a few questions related to my case but will reiterate briefly. I was a very healthy active 41y/o guy until 4 months ago, and developed a leg injury and strep throat at the beginning of august, had to take some antibiotics in the form of Zithromax, on day 5 of 5, I started getting nauseuos and belching alot with a lump in my throat, since then I have had innumerable evaluations, to sum it up three EGDs, two at Mayo, one locally, cat scan, MRI of abdomen, two U/s, Hida scan, butt load of labs and stool studies, you name I have had it. To my shock diagnosed with celiac both by biopsy three times and celiac labs TTG IgA, I have persistent epigastric pain that 90% radiates thorugh into my back and right shoulder blade that is virtually constant now. Pain is a gnawing relentless pain that I cannot escape, and the back pain is killer at times. recently with last trip to mayo, they also told me I have small bowel bacterial overgrowth, now am taking additional antibiotics to try to eradicate this which they feel may be aggravating my celiac. My TTG IgA has normalized, I do have some gallbladder polyps that are small on ultrasound, but they cannot understand why my pain is still there??? Fortunatly I biopsied negative for lymphoma with these crazy tests at Mayo, and had even an MRI enterography of my abdomen that looked OK. I am still in considerable constant pain, dont know what to do now as it is not getting better?? Maybe go for another opinion, but where after Mayo?? still taking the antibiotics, praying that will help. Have been gluten free and milk protein free as well by the book and the doc said my celiac labs have returned to normal in this 3 month timeframe, but why do I feel like dog poo???? The anxiety and depression are really taking ahold now as well because I am not making any progress. THey are considering maybe a coexsting gallbladder issue and taking it out to see if it helps, as none of the GI docs can explain the severe back pain, and I know my back is OK cause I had and MRI of it as well. Please any thoughts??????????

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Booghead Contributor
Booghead
Posted

That sucks. I also get horrible back aches. The less I carry and move the better it gets. I'm in high school so back packs aren't a big help. I don't know about gallbladders but if your's has polyps perhaps removing it will help. Let me tell you something that doctors don't: having your gallbladder removed limits your food intake much more, spicy foods, italian (which celiacs can't really eat I suppose) thai, chinese, etc. My stomach pain has gone away a lot since going gluten free. Perhaps you are allergic to another kind of food as many celiacs find out after going gluten free. I would suggest only eating meat and Veggies and Fruit. Nothing processed. No soy. This is just my suggestion because of what I have learned so far. B) Good Luck and Get Well! Keep us posted.

AVR1962 Collaborator
AVR1962
Posted

Had a similiar post just a few days ago, killer back pain....back feels like it is frozen. Have done so much to try and alieviate the pain. Found this and have decided to increase my magnesium in attempt. Last night I did take aspercream to my whole spine and neck, better today. Open Original Shared Link

sandsurfgirl Collaborator
sandsurfgirl
Posted

I agree with the clean diet suggestion. I think you were on a thread about being gluten free but not necessarily eating healthy right? You've only been gluten free a short time and maybe your body needs more time to heal and the right fuel, etc. to heal.

I would go on a clean diet. Eat easy to digest foods like soups that have some chicken or turkey and lots of veggies. Cut out soy and maybe even nightshades for awhile. See if those things help you improve and then you add them back in after a few weeks.

Also try some relaxation techniques like meditation and affirmations. It really does help and there are studies that show that it promotes healing. I have been dealing with anxiety and depression over health issues and the meditation has made a tremendous improvement. While I'm deep breathing and relaxing I visualize my body being healed. There are tons of ways to do it and it doesn't have to be connected to a religious belief. I'm a Christian and I found some Christian meditations but whatever works for you.

Hang in there. You'll get it sorted out.

TTNOGluten Explorer
TTNOGluten
Posted
  • Author

Thanks for the words of wisdom, I have tried to keep my diet as healthy as possible for quite some time in addition to being gluten free. Just so very frustrated, living in pain just flat out sucks. Never thought this is where my life would end up, I get frustrated looking back to 5 months ago when I felt like a million bucks, i guess it is easy to look as the past and feel that way. I look to music as my stress relief, play a few songs on the drums and that sometimes takes me from this.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Thanks for the words of wisdom, I have tried to keep my diet as healthy as possible for quite some time in addition to being gluten free. Just so very frustrated, living in pain just flat out sucks. Never thought this is where my life would end up, I get frustrated looking back to 5 months ago when I felt like a million bucks, i guess it is easy to look as the past and feel that way. I look to music as my stress relief, play a few songs on the drums and that sometimes takes me from this.

Sorry I got you confused with someone else. I know how you feel. I'm not dealing with an endocrine issue on top of celiac and just 10 weeks ago I was running all over Disneyland with my kids and working out. Now I'm recovering from a long bout of illness and still going through testing to rule out another condition. I have suffered from anxiety too.

Hang in there. You've been through a lot physically and you will heal. It will take time. That's what I have to remind myself as well. Recovery from illness is recovery and it takes time for your body to heal.

I play guitar and sing and it is a huge help to me. I also bought some music called Metamusic that has binaural beats in it. It reorganizes your brainwaves patterns. There's a ton of research about it. You can look it up on Open Original Shared Link They also sell it on that big shopping website we aren't allowed to mention. It has done wonders for anxiety and stress relief for me.

Michelle1234 Contributor
Michelle1234
Posted

Sounds awful. If you aren't taking probiotics you should start right away. And not by eating yogurt or some other fluffy product. You need the high dosage concentrated type to repopulate your gut after the strong antibiotics.

Also check out Open Original Shared Link for more information on side effects of the antibiotic you were taking.

Well worth checking out anything your prescribed to see if the side effects are worth it. There are antibiotics I know I tolerate well, as well as pain drugs. If I'm prescribed something outside that circle I check askapatient.com to see what I would be getting myself into.

Since you asked for alternative suggestions. If you don't have a holistic Dr. perhaps try finding a reputable one in your area and consulting them. They may have good solutions that the Mayo clinic hasn't come up with as they have a wider set of solutions available to them.

Good luck!

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captaincrab55 Collaborator
captaincrab55
Posted

The anxiety and depression are really taking ahold now as well because I am not making any progress. THey are considering maybe a coexsting gallbladder issue and taking it out to see if it helps, as none of the GI docs can explain the severe back pain, and I know my back is OK cause I had and MRI of it as well. Please any thoughts??????????

Have you had your VITAMIN D checked yet ??? If your like me with the shoulder, neck & back, with the shoulder being the worst pain when my D level is low...

Wouldn't hurt to get all Vitamin levels checked...

Good Luck...

saintmaybe Collaborator
saintmaybe
Posted

May I suggest seeing a chiropractor? I know, I know, not another doctor! But mine has been amazingly accepting of my self diagnosed celiac, and is monitoring my blood tests through my PCP. He's very knowledgable about nutrition and celiac, and one of the first things he said to me was, "let's see what we can do to get you off these prescriptions." he also said that the amount of daily pain I was in was unacceptable. First person in a long time in the medical community who said, let's fight! You're young and this is not cool!

He took some xrays of my lower back, and my pelvis is totally put of alignment with my spine. I also have pinched nerves and beginning arthritis. Chiropractors, in my experience, take your complaints much more seriously than MD's and have much more beneficial suggestions for improving health.

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