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Several Diffrent Things Going On. Need Advice.

Crystalkd

By Crystalkd
in Coping with Celiac Disease

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Crystalkd Contributor
Crystalkd
Posted

I thought I was doing great and even gaining weight. In the last three weeks all that has changed. I went to my PCP and had gained six pounds so we were thrilled. Then my back went out, The next week I went to a scheduled allergist appointment and was told I wasn't allergic to any food but had a few enviro allergies. When I got on that scale I was 116 and made a mental note to talk to my PCP about it when I saw him. Then I want to my nerou and and that scale said 111, At this point I was scared to death and went straight to my PCP from there. In the middle of this the MRI came back on my back and now they have to opperate before I lose more function. I'm scared about that because its my back and then I'm going to be in the hospital for a couple of days at least. If my nerou had been paying close attention since he KNEW there was a problem with my back this could have been avoided. If THey had done an MRI in the ER when I asked they could have given me a back brace a week before I actually got one. My sister is moving in with me to help me but she is not gluten-free and is learning but the having gluten around my house agian is scary.

My PCP is sending me to a celiac disease specialist to try to figure out what's going on but I don't want to gluten load agian just to do the tests agian.

I am now at my lowest weight and the fear is starting to set in agian. I thought we had this figured out but I'm still losing weight on the diet. The blood allergy test and the prick test don't match. Now I'm going to have a hospital stay. How good are hospital about the diet? It seems like everything is happening at once just when things were leveling out!

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missy'smom Collaborator
missy'smom
Posted

It might be a good idea to see the Celiac specialist. Some are very understanding of the problems with the testing process and that some just can't go through a gluten challenge and may not advise you going through it. But they can be very knowledgeable about related problems and the testing, diagnosis and treatment processes for them that a regular Dr. might not be as helpful with. They can also rule out other GI problems.

I'm sorry you've got so much on your plate right now. I wish you well. Take Care.

Ursa Major Collaborator
Ursa Major
Posted

What is the back surgery for? I find that I get terrible back pain not just from gluten, but from all lectin foods. Those include all grains (not just gluten containing ones), which include rice and corn, eggs, all dairy, legumes and nightshade vegetables (potatoes, tomatoes, peppers, eggplant). My back will go out completely when eating those foods.

Crystalkd Contributor
Crystalkd
Posted
  • Author
What is the back surgery for? I find that I get terrible back pain not just from gluten, but from all lectin foods. Those include all grains (not just gluten containing ones), which include rice and corn, eggs, all dairy, legumes and nightshade vegetables (potatoes, tomatoes, peppers, eggplant). My back will go out completely when eating those foods.

I have Cerebral Palsy as well and I had a major surgery to cut some nerves in '89. With out it I don't think I'd be walking right now but it's caused back problems. They told me I had a buldging disk in L5 4 years ago but was told it wasn't worth doing anything about. Now my L4 and 5 have slipped and are starting to compress my spinal cord which is causing bladder problems and intermitant numbness and tingling in my legs that I'd been telling my neuro about for years but he just said it was my CP. Needless to say the more I think about it the madder I get! Now they have to go in and put screws and maybe a rod in my back to stabilize it. Until then I'm in a pretty rigid back brace. I know this was not a food related issue although it may not have helped. When the scale at my neuro saw the 111 lbs he said I was within normal weight and not to worry about it, My PCP doesn't agree and thinks I'm underweight as do I. I was 135 this time last year. I've lost all this weight since May.

ravenwoodglass Mentor
ravenwoodglass
Posted
. Now my L4 and 5 have slipped and are starting to compress my spinal cord which is causing bladder problems and intermitant numbness and tingling in my legs that I'd been telling my neuro about for years but he just said it was my CP.

How long have you been on the gluten-free diet? Are you supplementing with B12 in the sublingual form? I had these issues for years and eventually progressed to losing bowel control also. I was also diagnosed with bulging disks. They were going to do surgery to repair 'damage' and sent me to a PT before the surgery. This was when I finally got diagnosed after the PT nagged at me to go to an allergist. Long story short after about 6 months strictly following the diet, a few months of PT, and supplementing with large sublingual doses of B12 the surgery was not only cancelled but I regained bowel and bladder control and full movement. I am not saying the same 'miracle' will occur for you but if you are not supplementing with B12 and if you are new to the diet make sure you are very strict with it both before and after your surgery. Be very careful of any meds they should give you by mouth. Make sure your doctor knows how dangerous generics can be for us and that they need to check everything. Good luck and I hope you get some relief from your pain soon.

Crystalkd Contributor
Crystalkd
Posted
  • Author
How long have you been on the gluten-free diet? Are you supplementing with B12 in the sublingual form? I had these issues for years and eventually progressed to losing bowel control also. I was also diagnosed with bulging disks. They were going to do surgery to repair 'damage' and sent me to a PT before the surgery. This was when I finally got diagnosed after the PT nagged at me to go to an allergist. Long story short after about 6 months strictly following the diet, a few months of PT, and supplementing with large sublingual doses of B12 the surgery was not only cancelled but I regained bowel and bladder control and full movement. I am not saying the same 'miracle' will occur for you but if you are not supplementing with B12 and if you are new to the diet make sure you are very strict with it both before and after your surgery. Be very careful of any meds they should give you by mouth. Make sure your doctor knows how dangerous generics can be for us and that they need to check everything. Good luck and I hope you get some relief from your pain soon.

My b12 levels are fine. We check them often! I got so weak when I first got sick that they got me into pt because I lost so much strenghth and movement. The pain did not get better with the PT. My ortho would have sent me to PT if he thought it would help. I see him Thursday so we'll discuss more about everthing then.

JulesNZN Newbie
JulesNZN
Posted

Hospitals are VERY BAD about Gluten Free!!! Bring your own food and plan ahead! The hospital is very cooperative when you bring in your own items, they will label it for you and keep it on the same floor you just need to ask for your food. The nutritionists are not usually well informed, be prepared to do a lot of explaining. Do not count on the hospital to be able to handle your special dietary requirements they are set up to feed large amounts of people and can not be trusted to give you safe food. They kept trying to feed me JellO!

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Crystalkd Contributor
Crystalkd
Posted
  • Author

I know a little more about exactly what's up with my back now. There are several rings in your spinal cord that add support. With my other surgery they had to remove them. It dosesn't cause a problem for many people but it is for me. My back is slowly shifting. So this is something that has nothing to do with my diet at all nor would a chiropractor do any good.

To answer a pervious question I've been on the diet since June.

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