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The Bad News Keeps Rolling In.

Brooklyn528

By Brooklyn528
in Coping with Celiac Disease

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Brooklyn528 Apprentice
Brooklyn528
Posted

Hi, I'm having a really hard time coping right now, and I need some help. I have had two autoimmune diseases diagnosed in the past year. Just yesterday, I found out that my mother has lupus. I have a lot of the symptoms also. I'm being sent to a rhuematologist and getting bloodwork done to check for RA, Thyroiditis, and Lupus. I'm just having a hard time accepting all of this. I'm only 24 years old, and I feel like my world is falling apart around me. My children are having lots of odd symptoms, and now I worry my daughter might already have Lupus or JRA. She has positive IGG and popping joints with soreness. She falls asleep in the car on the way home from school. I just don't know what to do. I'm lost and tired. I wonder when it will end. How many diagnosises can I get before they find everything? I'm just wondering if anyone out there is going through the same thing or has gone through it already. I need someone to talk to.

Thanks,

Brooklyn

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mcoffey21 Newbie
mcoffey21
Posted
Hi, I'm having a really hard time coping right now, and I need some help. I have had two autoimmune diseases diagnosed in the past year. Just yesterday, I found out that my mother has lupus. I have a lot of the symptoms also. I'm being sent to a rhuematologist and getting bloodwork done to check for RA, Thyroiditis, and Lupus. I'm just having a hard time accepting all of this. I'm only 24 years old, and I feel like my world is falling apart around me. My children are having lots of odd symptoms, and now I worry my daughter might already have Lupus or JRA. She has positive IGG and popping joints with soreness. She falls asleep in the car on the way home from school. I just don't know what to do. I'm lost and tired. I wonder when it will end. How many diagnosises can I get before they find everything? I'm just wondering if anyone out there is going through the same thing or has gone through it already. I need someone to talk to.

Thanks,

Brooklyn

HI, So sorry to hear that you are having a hard time coping.. It must be so difficult at such a young age to be going thru this.. Though I don't personally have any auto immune problems, BUT both of my children do... My 14 year old daughter has Celiac Disease and is now having further testing for RA, and other various symptoms.. My 11 year old daughter was diagnosed with Hashimoto's a few months back.. It has been a rocky, rocky road for us, and I would give anything to take all of my children's health problems so they would not have to endure the pain/fatigue and everything else that comes with these issues. I don't know that there ever will be an end to this for you , or for my family, but there is hope! Be vigilant with your diet, listen to your body! When you are tired, rest! Take your vitamins, and find a doctor who is VERY through. Most of all, research, and reach out! I firmly believe that sharing your story will help you feel better emotionally, which in turn will help your physical health, even if just a small amount.. Stay strong!!!!

And I must say, if your daughter is having any kind of symptoms whatsoever, have her tested.. The sooner she is diagnosed with anything, the sooner you can begin to relieve her symptoms.. My daughters went undiagnosed for several years... How I wish I could have had them diagnosed in the very beginning..

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mommida Enthusiast
mommida
Posted

Well that is a lot going on! I have learned over the past few years not to even bother to ask if it can get any worse.

Take some time to address what you are feeling. Realize you can't be guilty or wrong for feeling, for having human emotions. If you need to cry then cry, let it out. Call your best friend. Make an appointment for something fun for you to enjoy.

Just keep breathing. Break it down to what you can handle. If it can't be one day at a time, how about 5 more minutes.

If you are still feeling overwhelmed, see a professional counsler/ Doctor.

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GFinDC Veteran
GFinDC
Posted

Hi Brooklyn,

Sounds like a lot going on in your family. I suppose you are aware of the link between celiac disease and other auto immune diseases? If you google "celiac associated condition" you will find some links listing them. Basically, people with celiac are more likely to develop other autoimmune diseases. I don't know how strict you are with the diet, but it might be a case where you should try extra hard to avoid any gluten. It could help your situation out some. Some of us follow a whole foods diet, making most meals from whole ingredients and avoiding processed foods. That way you don't have to read lots of labels, (the label on a potato is pretty short) and can avoid cross contamination issues too. I also think it might be good for you to try some DPP-IV. DPP-IV is a digestive enzyme that can help break down proteins, including gluten and casein. It is not able to break down large amounts of gluten though, only small amounts like you might get from accidental cross contamination.

Here's a list of the top 8 allergens for the US. Since soy is one of them maybe you could try eliminating it. For that matter maybe try eliminating all the top 8 allergens and see if it helps anything. An elimination diet might help sometime too.

* Milk

* Eggs

* Peanuts

* Tree nuts (such as almonds, cashews, walnuts)

* Fish (such as bass, cod, flounder)

* Shellfish (such as crab, lobster, shrimp)

* Soy

* Wheat

Open Original Shared Link

I saw your other thread somewhere on the forum. I was trying to remember the name of this ask a patient site, to post for you. They have reviews by patients of different drugs. It is kind of interesting to read what patients have to say about medicines vs. what doctors and drug makers say in their advertising.

Open Original Shared Link

I hope you feel better soon! :)

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Brooklyn528 Apprentice
Brooklyn528
  • Author
Posted

Just a little update. I've now been admitted to the hospital here in Indianapolis. I was having what I thought was blood in my urine, but it turns out that it's not blood but myoglobin. This is released when muscle tissue is being broken down. My hepatologist is running a gammit of test to find out what is going on. But i will keep everyone who has replied updated on my progress.

Brooklyn

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twe0708 Community Regular
twe0708
Posted
Just a little update. I've now been admitted to the hospital here in Indianapolis. I was having what I thought was blood in my urine, but it turns out that it's not blood but myoglobin. This is released when muscle tissue is being broken down. My hepatologist is running a gammit of test to find out what is going on. But i will keep everyone who has replied updated on my progress.

Brooklyn

So sorry to hear this! Hang in there and you will get through this! You are in our thoughts and prayers!

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esammarie Newbie
esammarie
Posted
Just a little update. I've now been admitted to the hospital here in Indianapolis. I was having what I thought was blood in my urine, but it turns out that it's not blood but myoglobin. This is released when muscle tissue is being broken down. My hepatologist is running a gammit of test to find out what is going on. But i will keep everyone who has replied updated on my progress.

Brooklyn

Oh my goodness!!! I am so sorry you are going through this! Autoimmune diseases definitely are linked. If you have one, it's more likely that you'll have another or another. There are several articles and reports about this on this website and on trusted sources like www.csaceliacs.org, the website of the Celiac Sprue Association. I found the book Gluten-Free Living for Dummies really helpful. It's very informative and comforting at the same time. It helped me not feel so depressed about just being diagnosed with celiac disease and dermatitis herpetiformis.

Thank goodness the doctors put you in the hospital and are taking this seriously and not brushing you off, though hospitals aren't great places to be.

My sister just was diagnosed with Sjogren's and they said she's negative for celiac antibodies at this time and doesn't have lupus at this time. They were not surprised that she and I developed our symptoms at the same time - I am 42 and she is 41. They thought I had lupus back in you college years but it really was fibromyalgia (and maybe even when this celiac stuff started) .Our Grandmother had Hashimoto's and one of her daughters - my mom's sister and our aunt - has RA. I guess it all is in the family!

Finding comfort and "kindred spirits" here on this forum has really helped me. I hope it helps you, too. If I can help in any way, please contact me. I will pray for you and wish for the doctors to do their best to get you on the road to good health!

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Swimmr Contributor
Swimmr
Posted

I'll keep you in my thoughts and prayers. Very sorry you're going through this!

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TrillumHunter Enthusiast
TrillumHunter
Posted

Prayers for you and yours!

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Glamour Explorer
Glamour
Posted

Try not to stress and keep us posted.

Just curious, if one is celiac and catches it early, and abides by the diet, will that help to prevent further deterioration and other autoimmune disease? Or is it just a given.

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Brooklyn528 Apprentice
Brooklyn528
  • Author
Posted

Well, I'm gonna be staying another day. The doctors didn't come and tell me anything today, so I believe they are still trying to figure it out. It rather odd to most of the doctors I've talked to so far that I am having myoglobin in my urine. I just hope that this is the last extended stay that I have to endure. I miss my babies and being at home. I will let everyone know when/if I get any news.

Brooklyn

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GFinDC Veteran
GFinDC
Posted

Well, come on, Friday is golf day right? :D:) Maybe they have some test results they are waiting on? Anyhow, maybe a good rest will do you good. I said a prayer for you too. Hang in there and take a little breather from the normal routine eh?

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