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I'm Always Worried Something Else Is Going On!

DonaldandAlanda Evans

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DonaldandAlanda Evans Apprentice
DonaldandAlanda Evans
Posted

Since diagnosis of Celiac Disease and the subsequent diet, I have had a drastic reduction in symptoms. I went from having upwards of 15 bowel movements a day to having 2. The bloating happens less often, and overall I have more energy. A few things still remain that bother me. My bowel movements are solid now but still remain a tan color (when will this change?) The tingling in my legs has gone but I still get it on my finger tips of my left hand. I'm also still getting weird aches and pains all over. I've only been gluten free a month and I know it takes time......i'm just really worried. All of my vitamin levels are in the normal range and my thyroid function test came back normal. I avoid dairy as well.......not as strict as I am with gluten.....some dairy slips in.

Is it common to worry about other illnesses after diagnosis? Did anyone else do this? At first I was excited that it was finally figured out, but now i'm obsessing over other things.

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Wolicki Enthusiast
Wolicki
Posted

OK, try to relax. It has been only a month. You were sick for a long time, and it takes time to heal. Everything you are experiencing is normal. It may take a bit longer for everything to get back to normal, especially the tingling. Stay gluten free, say thanks that you know what it is and you know how to fix it, and try to start enjoying life with that renewed energy!

I thought my whole body was going to fall apart after going gluten free, but it all resolved itself. I've been on the diet for 8 months, and feel better than I have in 20 years. You'll get there!

twe0708 Community Regular
twe0708
Posted

Since diagnosis of Celiac Disease and the subsequent diet, I have had a drastic reduction in symptoms. I went from having upwards of 15 bowel movements a day to having 2. The bloating happens less often, and overall I have more energy. A few things still remain that bother me. My bowel movements are solid now but still remain a tan color (when will this change?) The tingling in my legs has gone but I still get it on my finger tips of my left hand. I'm also still getting weird aches and pains all over. I've only been gluten free a month and I know it takes time......i'm just really worried. All of my vitamin levels are in the normal range and my thyroid function test came back normal. I avoid dairy as well.......not as strict as I am with gluten.....some dairy slips in.

Is it common to worry about other illnesses after diagnosis? Did anyone else do this? At first I was excited that it was finally figured out, but now i'm obsessing over other things.

I worry too and the problem is I had all of these symptoms before I was diagnosed and thought something was wrong before being dx but just said to myself it's part of getting old. I am only 40! Before being dx I went to a dentist and they asked me if I had a problem with acid reflux bc he could see how my enamel on my teeth was bad. I also had and still have a problem with my gums receding and am now noticing my legs are bruising more. I had anxiety occasionally but that is getting better. Not more than 4 pills a year. Toe nails have been dry but those are getting better. I am taking biotin for hair and nails and will look into more Vit. K for bruising. I have also had a problem with feeling dehydrated even before being dx and my doc just blew it off, but I read some where that if you aren't absorbing the nutrients from your food then you probably aren't absorbing water when you drink it like you should be. The thing is is if you are dx with Celiac it's not just Celiac that you will have from what I have read. You eventually have all of these other side issues. My husband calls me a hypocodriac so I have decided not to discuss anymore of my issues with him. I would probably say the same thing he said if it was someone else saying all these different things but I guess they just don't understand unless they have it too. After all we have all been going for sometime now without any nutrients from our food so of course other areas of our body would be sick too! Good luck!

gf-soph Apprentice
gf-soph
Posted

I can sympathise with how you feel. I got some useful advice when I was at a celiac society exhibition shortly after going gluten free - the expert gastroenterologist there told me it would be at least 6 months until my body was back to normal after giving up all gluten. That allowed me to relax a bit and not be oversensitive to everything. Unfortunately I have continued to have other problems, I am having further follow up knowing it is not due to direct effects of gluten.

It sounds like you have had a great early response. I would wait until the 6 month mark and then follow up on any issues that remain (assuming things don't change drastically over a short period of time). Your body is healing, and making up for damage that usually takes place over years. If you want to be sure you can keep a food and symptom diary, that can help you both to see improvements, and also to see whether any residual symptoms may be due to secondary food intolerances. You need to strike a balance between being vigilant and paranoid, it's not easy I know :)

There are a lot of very knowledgeable people here, so you can always ask us along the way. Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted

One thing you are going to want to do is add a sublingual B12 to your vitamins. Our bodies can stop being able to utilize this vitamin but the blood levels will still look fine for a long time. The sublingual B12 should help those tingles disappear and will also help any nerve damage you have to repair more quickly.

AmyT Newbie
AmyT
Posted

I was feeling the same way! I felt great at first, then a time of not so great and it seemed like something different everyday. It was frustrating. Now I am 8 weeks gluten free and I am starting to feel really good most days. My problem that mostly bugs me is muscle tightness and muscle knots. I cut back on my vitamins and a few days later I could really tell so keep those up. With me, if my vitamin b12 is down, the corners of my mouth get sore and cracked.

It will take some time to detox. Take it easy, eat clean whole foods, not a lot of processed foods.

Also what really helps me from thinking about it all the time is getting off the computer and doing something else like taking a walk, getting together with friends, etc. Otherwise I sit here and look up every symptom for hours, no wonder my neck and shoulders are tight!!!

Good luck and you can do it!

sandsurfgirl Collaborator
sandsurfgirl
Posted

I went through a period where I was panicking that celiac had caused some horrible things to my body. But everyday I feel better and better.

My biggest challenge is dehydration and electrolyte imbalance. If I don't sip water all day long and front load in the morning with a couple of big glasses of water, plus my electrolyte replacement, I will get dizzy spells and short of breath again. My doc said autoimmune disorders can cause terrible dehydration and since I have hypothyroidism too it's my greatest issue right now.

It's a pain to take water everywhere and drink water in the morning. I hate drinking it with breakfast, but if I don't I start the day off bad and it never gets better.

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Guest Dori827
Guest Dori827
Posted

What electrolyte replacement do you use. I'm having the same things and was also just diagnosed with hypothyroidism. Thanks!

oceangirl Collaborator
oceangirl
Posted

You have some good responses here. It took me 2 YEARS to get the bugs out and now, over 5 years gluten free, I continue to suffer periods of apparent "glutening" where I cannot identify the offender! It is frustrating. I kept a food log for five years that was extremely valuable; you may find it helps.

Right now, for instance, I am suffering symptoms similar to gluten and am completely stumped as to what they're from.

Oh yes, other intolerances may show up particularly in the beginning (a year or more). I was without gluten, soy, egg, nightshades, corn, legumes and dairy for 2 YEARS. Dairy, corn, some nightshades and egg are now successfully back in.

Hang in there,

lisa

mommida Enthusiast
mommida
Posted

There is also a connection to Secondary Addison's Disease. (From an NIH ,the conclusion that Celiac patients have an 11 fold liklihood of developing secondary Addison's disease.) The symptoms you are describing sound like some of the Addison's symptoms. The first test that should be looked at would be an electrolyte profile. If you are found to have low sodium and high potassium you should proceed to the next test ACTH stimulation test.

I am new to looking into this as my daughter is having more unexplained symptoms and some of the symptom searches keep pulling me back into Addison sites.

Once again auto-immune diseases are more difficult to diagnose and now this would probable require a refferal to an endocronologist for treatment.

I went through a period where I was panicking that celiac had caused some horrible things to my body. But everyday I feel better and better.

My biggest challenge is dehydration and electrolyte imbalance. If I don't sip water all day long and front load in the morning with a couple of big glasses of water, plus my electrolyte replacement, I will get dizzy spells and short of breath again. My doc said autoimmune disorders can cause terrible dehydration and since I have hypothyroidism too it's my greatest issue right now.

It's a pain to take water everywhere and drink water in the morning. I hate drinking it with breakfast, but if I don't I start the day off bad and it never gets better.

detritus Apprentice
detritus
Posted

I went through a period where I was panicking that celiac had caused some horrible things to my body. But everyday I feel better and better.

My biggest challenge is dehydration and electrolyte imbalance. If I don't sip water all day long and front load in the morning with a couple of big glasses of water, plus my electrolyte replacement, I will get dizzy spells and short of breath again. My doc said autoimmune disorders can cause terrible dehydration and since I have hypothyroidism too it's my greatest issue right now.

It's a pain to take water everywhere and drink water in the morning. I hate drinking it with breakfast, but if I don't I start the day off bad and it never gets better.

Hey, I know you've mentioned gatorade, but I've actually become hooked on Pedialyte! Not the main brand one, but the mom-to-mom one-no flavor. It's cheaper and tastes like salty lemonade :P

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