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I Need To Stop Reading

adab8ca

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adab8ca Enthusiast
adab8ca
Posted

So, my sig has my details and I am going for a biopsy on Aug 31.

Regardless, I am going to go gluten free right after that.

I actually went gluten free from June 24 to July 26th but went back on gluten to get the biopsy.

I have no real gut symptoms but felt absolutely awful when I went off gluten. So much bone pain, my legs and feet were so painful,I sunk into a HORRENDOUS depression (and not that I was grieving for gluten, I couldn't care less and basically would eat cat poo if it would make me feel better)so I am scared that to go through that again. (Have felt OK on gluten for the most part although lately have noticed a few more GI symptoms (very very mild) and foul stools (although not D, just soft but foul).

Both my Dr and dietician seemed SO surprised that I wasn't immediately feeling better. They seemed to have no answers for me.

So I am reading and getting very scared about what else may be wrong. So, if you could all just virtually SLAP my hands to step away from the internet, I would appreciate it. (I'm the one whose boss basically said "you're so skinny,hope it's not cancer).

Right now I seem to have some flare up of some inflammation of knees and ankles and real muscle pain in my thighs (which has been on and off for months, was worse off the gluten). Just killing me and pain killers are not touching it.

Again, Dr. says she doesn't know what that's about.

This sucks, but I know you all know that. I am in Canada, in Southern Ontario and I cannot seem to locate a Dr. anywhere that specializes in celiac disease, and all the Dr's here seem to be most familiar with stomach issues and that's it. So, being a medical mystery is NOT sitting well with me, doing my own research is scaring me.

And as my stinking neuro said "well, even if it's celiac, gluten free won't help you because you have no GI symptoms".

And it seemed to be a self fulfilling prophecy, sigh...I know I have to give gluten-free a chance, but I read these success stories (and am thrilled for people that get relief) and am quietly freaking out that I will not get better.

Sorry, just venting. I so desperately want to get better.

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mushroom Proficient
mushroom
Posted

So, my sig has my details and I am going for a biopsy on Aug 31.

Regardless, I am going to go gluten free right after that.

I actually went gluten free from June 24 to July 26th but went back on gluten to get the biopsy.

I have no real gut symptoms but felt absolutely awful when I went off gluten. So much bone pain, my legs and feet were so painful,I sunk into a HORRENDOUS depression (and not that I was grieving for gluten, I couldn't care less and basically would eat cat poo if it would make me feel better)so I am scared that to go through that again. (Have felt OK on gluten for the most part although lately have noticed a few more GI symptoms (very very mild) and foul stools (although not D, just soft but foul).

Both my Dr and dietician seemed SO surprised that I wasn't immediately feeling better. They seemed to have no answers for me.

So I am reading and getting very scared about what else may be wrong. So, if you could all just virtually SLAP my hands to step away from the internet, I would appreciate it. (I'm the one whose boss basically said "you're so skinny,hope it's not cancer).

Right now I seem to have some flare up of some inflammation of knees and ankles and real muscle pain in my thighs (which has been on and off for months, was worse off the gluten). Just killing me and pain killers are not touching it.

Again, Dr. says she doesn't know what that's about.

This sucks, but I know you all know that. I am in Canada, in Southern Ontario and I cannot seem to locate a Dr. anywhere that specializes in celiac disease, and all the Dr's here seem to be most familiar with stomach issues and that's it. So, being a medical mystery is NOT sitting well with me, doing my own research is scaring me.

And as my stinking neuro said "well, even if it's celiac, gluten free won't help you because you have no GI symptoms".

And it seemed to be a self fulfilling prophecy, sigh...I know I have to give gluten-free a chance, but I read these success stories (and am thrilled for people that get relief) and am quietly freaking out that I will not get better.

Sorry, just venting. I so desperately want to get better.

Slap, slap, slap!!! There, that better? No, I don't mean or recommend that. For some of us our computers are our only option. So your blood work says celiac, and your symptoms are (maybe??) starting to say something digestive, but up till you had the blood tests they didn't. Have they done a CRP or ESR on you (C-reactive protein or erythro-sedimentation rate)? These are measures of inflammation in your body. It's beginning to sound like RA type symptoms which take longer to go away on a gluten free diet than the GI issues. They could also see if you are RA positive on blood work. My major manifestation was RA-type symptoms (although I had had the IBS stuff for a lifetime and had it dismissed because it was not disabling). But the RA symptoms really got me and no, the painkillers didn't touch it. Maybe see if you doc is receptive for this testing? I was RA sero-negative by the way, but psoriatic arthritis often is and the psoriasis developed later. At any rate, I sure hope you find someone who is actually knowledgeable and willing to listen. Wait until your biopsy and then if you don't get any further answers, push them, as hard as you can. I find it always helps to have other suggestions on hand as to where they might look next. I hope others can give you some other ideas. {{{hugs}}}

adab8ca Enthusiast
adab8ca
Posted
  • Author

thank you for reading and slapping :)

I have been tested for antibodies to RA, Lupus, Sjogrens etcetc a whole host of other autoimmune stuff...all negative except for a spurious ENA result that did not get identified as anything in the labs panel, so the neuro is sending me for more testing to a rheumatologist..actually, I don't think I had the ESR or CRP. Will ask my doc when I see her on Sept 12.

blood work definitely says Celiac, GP thinks it is definite...Just that the gluten free did not go very well. It was easy just I got no relief in a month. I just hope and think that perhaps neuro symptoms take longer to resolve...dunno... i just know i am pretty freaked out.

gary'sgirl Explorer
gary'sgirl
Posted

I was diagnosed through biopsy with Celiac 10 months ago. The damage was bad enough that it still showed up after being pretty much gluten free for six weeks prior to the endoscopy.

I didn't realize that I had digestive issues, because I was so used to them that I thought it was normal. Most of my symptoms though - and the worst of them - are neurological. I do not feel better yet and in fact about two months after I was diagnosed more symptoms showed up and they have not gone yet.

I know that I also have bacterial overgrowth problems and I think that this may be what is holding me back from starting to heal. I have only just put this together and I think that I am going to try the specific carb diet.

I don't know if this is really that encouraging, because finding out that it may take a lot longer to feel better than expected can be quite discouraging, but there is hope that although you may not be the "normal" fast responding celiac to the diet, there are others of us out there and from what I have read people who tend to display the neuro symptoms seem to take longer to heal.

I hope you find some answers and encouragement soon!

Please let me know how you are doing and what you figure out.

~Sarah

adab8ca Enthusiast
adab8ca
Posted
  • Author

thanks Sarah

i remember your post about 10 months...

my dietician said it can take a year...i guess we need to be patient.

i have been so lucky with my health and this has blindsided me totally...

ravenwoodglass Mentor
ravenwoodglass
Posted

And as my stinking neuro said "well, even if it's celiac, gluten free won't help you because you have no GI symptoms".

Your neuro was flat out wrong. I did have severe GI symptoms when I was finally diagnosed and those went away pretty quickly. The neuro related stuff I was told by many doctors that it had nothing to do with gluten. So I had no expectation that those would ever resolve or that my arthritis would 'go away'. The only one who gave me any hint that they would was the elderly doctor who actually diagnosed me. Sure enough within 6 months on the diet my arthritic pain was gone and I have slowly repaired as far as the neuro symptoms go. The depression lifted forever after I got through the month or so of withdrawl, never to return unless glutened. Don't give up hope and as soon as that biopsy is done get on the diet and do it strictly. It may not give instant relief but it will help.

SaraKat Contributor
SaraKat
Posted

I have my biopsy tomorrow too!! My symptoms sound a little similar to yours. I don't seem to have the classic GI symptoms either. I have really bad left side rib pain/inflammation- the last 2 ribs are super painful- when the Dr pressed on the bone last week it hurt really bad. I sometimes have some stomach pain, but not very often.

I can't wait to just start the diet, I really hope this joint pain goes away soon.

Good luck tomorrow!

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adab8ca Enthusiast
adab8ca
Posted
  • Author

Good luck tomorrow SaraKat!

Let me know how it goes...

I am in Canada so I expect my results will take FOREVER.

SaraKat Contributor
SaraKat
Posted

Hi Adab8ca- how was your procedure? Mine was totally fine! I cannot believe how much easier it was than I thought it was going to be! I was in at 6:45 and out by 8:30! I took the day off work today, but I think I could have totally gone in!

As for the results- he told me he saw "scalloping" of the walls of the intestine and told me to start the diet today or tomorrow. He also said to make an appt with him in 2 weeks to go over all the final biopsy results. He showed me and my husband some of the pictures from it- it was pretty cool, kind of gross I guess. He said he didn't see any inflammation and everything else looked normal in my stomach and esophogus which I guess would be expected since celiac affects the intestine.

Did your Dr give you any indication about your results?

Another funny thing the Dr said- he says "the diet is very easy to stick to- just eat fish/meat/veggies/fruit"! I was like OMG, that does not seem very easy to stick to! I love my chips and dip and regular cereals, candy, etc.

adab8ca Enthusiast
adab8ca
Posted
  • Author

Hi Saracat

It was fine,thanks for checking :) I had to have a colonoscopy as well (just routine) so the prep was horrible.

Dr. said he took a ton of samples but also said just from the endoscopy it looked like classic celiac, he seemed quite certain...So here we go on a new adventure! I get my results in 3-4 weeks...

ravenwoodglass Mentor
ravenwoodglass
Posted

Another funny thing the Dr said- he says "the diet is very easy to stick to- just eat fish/meat/veggies/fruit"! I was like OMG, that does not seem very easy to stick to! I love my chips and dip and regular cereals, candy, etc.

Glad you both got definate diagnosis. If the doctor could see the damage even without a biopsy you are certainly in the right place.

You do not have to be chip, cereal, candy, pizza and bread free forever you just have to find ones you like that are gluten free. For at least the first month or two do follow the doctors advice and go with fresh unprocessed meats, veggies and fruits. After you have healed a bit then add in some of the specialty gluten free foods like pastries, breads etc.

If you live near a Wegmans they label all gluten-free items and make the transition easy as it can be. You may go through some withdrawls and have some ups and downs for a bit. Ask any questions you need to but do start the diet today. You don't need to wait for the biopsy results.

GFinDC Veteran
GFinDC
Posted

Sounds like the docs think you have both have celiac ladies!

@ adab8ca,

Don't be too concerned about not feeling better right away. All of us are individuals and have our individual reactions to things. There is also a withdrawal period for some people that can be unpleasant while the body/brain adjusts to not having gluten around.

I felt better within a few days myself but also developed other intolerances too that took me a couple years to identify. Like fricking soy. Grrr!

It can be a continual learning and adjusting for a while as you become more aware of how your body reacts to foods. But looks like you are on the right track.

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