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Mandy21807

Joint Pain And Fatigue

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Hi, i was diagnosed with celiac disease through blood test and biopsy 4 weeks ago and have been eating gluten free ever since. I had no gastro or other symptoms of the disease that I am aware of, just had a consistently high alt liver test which prompted looking for further explanations and led to the celiac diagnosis.

Well about 2 weeks ago I started having joint pain. It has steadily gotten worse and more symptoms keep popping up, fatigue, chills, red cheeks and nose that feel warm to the touch, dry eyes, sore throat. The joint pain is ok in the morning but gets steadily worse throughout the day until I am in tears by night time.

I went and saw my gp today and he ordered blood tests to rule out other diseases (ra, lupus, lyme, etc). He read some notes from my psychologist, cut me off from telling him my symptoms/issues and then proceeded to tell me that I needed to "accept that it's probably all in my head" and that its probably psychosomatic pain relating from depression/PTSD. I am so angry that he would just say that to me before seeing any results of the blood work. I am not depressed right now (though I have a history of depression) and the way he said it was just awful. I wanted to yell at him or try to explain myself better, but was so upset i just sat there and bit my tongue. I will wait for the test results before deciding what to do about this situation. After all, he might be right. I've never experienced pain like this before so I have no idea what the cause is. I have a follow up in a week to go over results, hopefully I can manage to get through it without too much more pain. The dr doesn't want me to take any of my supplements (multivitamin, fish oil, d3, melatonin) and told me no pills (zyrtec) until I see him next week. I wonder if I can try Advil still even though it doesn't do much for the pain.

I feel very frustrated and very much like he didn't listen to me or believe me. :(

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hi there,

 

try not to worry too much, a lot of people go through a withdrawal period when they first give up gluten. this could be the cause of your pain.

the other explanation could be contamination. sometimes people react to tiny amounts of gluten more severely  once they have cut it out.

recheck all the foods that you are eating- make sure they are absolutely gluten free. have you checked/changed all your cooking utensils,pot and pans

are you sharing your kitchen with other gluten eaters?

 

your symptoms are very similar to mine, although ive been told im not celiac. its difficult at first - you,ll make lots of mistakes ( we all have). all you can do is persevere and do your best to make sure everything is gluten free. you may also find that you cannot tolerate other foods- dairy most probably. but make gluten your first priority.

wishing you well - keep going - it will get better :)  

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I'm sorry you're in pain, and I'm sorry your doctor is such a jerk. So MANY of them are! (Check out the "Stupid stuff doctors have said" thread.)

 

I'm thinking that maybe you are now eating more potatoes than you used to? I did at first because instead of sandwiches, I would eat meat and potatoes for every meal. Potatoes are a nightshade vegetabel (as are tomatoes, peppers and eggplant), and they are known to cause joint pain in people who are intolerant to them.

 

For some reason, once we go gluten-free we MAY discover intolerances to other foods. I for instance, discovered that I am intolerant to corn of all things. THAT is SO hard to avoid - it's in everything!

 

Another thing to take into consideration is that you might be getting cross-contaminated. If you ingest even the tiniest amount of gluten, you will react. And once we have been gluten-free for a while, our reactions are usually much stronger than they were when we were eating gluten every day.

 

If you have gluten eaters in the house you need to be really careful about crumbs. And you need your own condiments and butter because if someone spreads some mayo or butter on regular bread and then dips the knife back into the container, that whole container is now contaminated. You need to get rid of your old wooden spoons and cutting boards because they are porous and you just can't get the gluten out of them. Same thing for scratched plastic or teflon. Your cast iron pans likewise, although they can be cleaned in your self-cleaning oven and then reseasoned.

 

Your stainers and collanders are probably still harboring gluten in those tiny little holes, and you need your own toaster too.

 

Read the Newbie 101 thread for more helpful tips.

 

And know that you are not alone. We are here for you to lean on, to answer any questions you might have, and give whatever support you might need. :)

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I'm sorry you're in pain, and I'm sorry your doctor is such a jerk. So MANY of them are! (Check out the "Stupid stuff doctors have said" thread.)

 

I'm thinking that maybe you are now eating more potatoes than you used to? I did at first because instead of sandwiches, I would eat meat and potatoes for every meal. Potatoes are a nightshade vegetabel (as are tomatoes, peppers and eggplant), and they are known to cause joint pain in people who are intolerant to them.

 

For some reason, once we go gluten-free we MAY discover intolerances to other foods. I for instance, discovered that I am intolerant to corn of all things. THAT is SO hard to avoid - it's in everything!

 

Another thing to take into consideration is that you might be getting cross-contaminated. If you ingest even the tiniest amount of gluten, you will react. And once we have been gluten-free for a while, our reactions are usually much stronger than they were when we were eating gluten every day.

 

If you have gluten eaters in the house you need to be really careful about crumbs. And you need your own condiments and butter because if someone spreads some mayo or butter on regular bread and then dips the knife back into the container, that whole container is now contaminated. You need to get rid of your old wooden spoons and cutting boards because they are porous and you just can't get the gluten out of them. Same thing for scratched plastic or teflon. Your cast iron pans likewise, although they can be cleaned in your self-cleaning oven and then reseasoned.

 

Your stainers and collanders are probably still harboring gluten in those tiny little holes, and you need your own toaster too.

 

Read the Newbie 101 thread for more helpful tips.

 

And know that you are not alone. We are here for you to lean on, to answer any questions you might have, and give whatever support you might need. :)

hi bartful 

great minds think alike  :D

i forgot about the newbie 101 thread - think i might have another read of it. it can only help.

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Thanks very much for your insight and help! I've been very careful about cross contamination, new pan and utensils, colander, my own condiments and a new blender and toaster. i do live with a gluten eater but his food is confined to one area and mine to another.I clean and wipe all counters before cooking and have been very careful reading labels and checking food on the Internet before I buy or eat it. I haven't been eating many potatoes at all, mostly rice and gluten free bread, as well as gluten free tortillas. I havent eaten at any restaurants so it cant have come from there. So I don't "think" I'm getting glutened but I can't be 100% sure. Maybe it's withdrawal, but I did feel pretty good for the first 2 weeks gluten free and then this stuff came on. I hope I can find some kind of explanation soon.

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OK, then it's time to look into other causes. Have you had your thyroid checked? If I'm not mistaken thyroid problems can cause joint pain. And even though your doctor sounds like a jerk, he is doing right checking for RA, Lyme and lupus. Do you spend a lot of time outdoors or remember getting a tick bite? (Not that that makes any difference - I know a lady whose only time outdoors was the walk across the lawn to her car and SHE wound up with Lyme disease.) 

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I had my thyroid checked about a month and a half ago when they did a ton of other bloodwork before my celiac dx. It was normal at that time. I haven't had any ticks at all this year that I know of. I do live in northern minnesota though so its definitely not unheard of to have contracted Lyme disease! I just feel so horrible and I don't know why, it's hard web though its only been 2 weeks it feels like forever! I hope I can find some answers.

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None of this is "in your head"--this just makes me angry! GP's are not celiac specialists!

Celiac symptoms are varied and unpredictable at times.

 

Your doctor is remiss for suggesting your symptoms are "psychosomatic" and not organic in nature.

Hon, I had the worst joint pain and fatigue there is and there are REASONS for them.

 

Some REAL causes for fatigue and joint pain in conjunction with celiac are:

 

Low Vitamin D

Low B-12

Low folate (B9)

and these need to be tested by your doctor, ASAP.

 

A certified G F multivitamin, fish oil and D3 (I suggest Country Life) will not harm you, but in fact may help, so I do not know why your doctor says not to take them. Reputable celiac specialists recommend follow up care and testing of vitamin levels, so request

the ones I mention above,

 

You need to be your own advocate now, honey. Do not let anyone tell you "it's all in your head". That's BS and very, very wrong.

 

I wish you were in upstate NY ... I would hand-walk you into my GI and he would do the tests.

You deserve better treatment.

 

I hate to say this, but my recovery was up and down and all around and I took a long time to feel better.

 

You may just be healing still and feeling all sorts of changes going on. 

Hang in there and we will try and help as best we can. 

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Thanks, I'm trying to stay positive and believe that there will be some reason for this pain, and you guys are giving me great ideas of what may be going on with me. Unfortunately I'm in minnesota, not New York but thanks you very much for the offer!! My gi is great but my gp not so much. I think I'm going to look into finding a new doc as this one just doesn't seem to be able to help me in a kind way. His personality just rubs me the wrong way, so it's time for a change.

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I have been diagnosed about 4 months ago 3 1/2 really but I am also suffering from joint pain, Just kinda started , infact when my Dr. was asking me questions he asked if I had joint pain and I said no. Now I do. It is a symptom of Celiac. I would assume from Vitamin deficiency. Sounds like your Dr. Doesn't want to hear your aches and pains but on the other hand he is doing blood work that needs to be done. Listen and write down the stuff these people are saying. They are very smart!! Some of them have been dealing with this stuff for years!! So I try and really listen to what they have to say. Good luck and don't let your Dr. Get away with telling you it is all in your head!! 

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Thanks, I'm trying to stay positive and believe that there will be some reason for this pain, and you guys are giving me great ideas of what may be going on with me. Unfortunately I'm in minnesota, not New York but thanks you very much for the offer!! My gi is great but my gp not so much. I think I'm going to look into finding a new doc as this one just doesn't seem to be able to help me in a kind way. His personality just rubs me the wrong way, so it's time for a change.

Your GI doctor should run those tests for you!.

CBC, CMP, Vit D, B-12, Folate and the ANA and c-reactive protein--which checks for inflammation and assorted musculoskeletal issues.

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