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Don't Know What I Have Please Help

Soconik

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Soconik Newbie
Soconik
Posted

Hello,

I guess I am looking for someone who can say "I have similar symptoms". I don't know if I have celiac or what is going on. Here's my symptoms:

6 months after my second child was born I started to develop severe pain in my upper finger joints. After several doctors visits I finally went to a Rheumatologist who diagnosed me with Psoriatic Arthritis. He put me on methotrexate which is an immune suppressant. It didn't seem to help at all. I stopped taking it because I do not like the idea of drugs and it wasn't working. I was also on Predisone for awhile and that did help with inflammation and pain but I developed pneumonia while on it so I don't like to take that either.

Fast foward a few years. My fingers are disfigured and the pain is tremendous. My rheumatologist says I have the hands of a 60 year old with severe osteo but I'm only 38. I take piroxicam, a NSAID, to help me through the day. I feel the arthritis spreading to my elbows, shoulders and other joints. My rheumatologist suggests Enbrel. My lungs are susceptible to bronchitis so I hate the idea of immune suppressants.

For the last few years I have also noticed small, itchy blisters on my knees. They are intense for a few days and then go away. It seems to happen more in the summer because I'm on my knees a lot with the kids. I thought maybe I'm allergic to the carpet. A few months ago I got one blister on one side of my trunk followed by another on the other side. At first I thought maybe I was coming down with shingles but I read they stick to one side of the body. I never thought much of the blisters because they don't bother me too much. Yesterday I decided to do some searching on google about the blisters and Dermatitis Herpetiformis came up. The photos shown are so extreme. I have only little blisters mostly on my knees and elbows. No one would notice them unless I showed them, the spots are a little red.

As for food problems - food has been making me feel terrible lately. I don't have stomach cramps and my bowels are in good working order but I get extremely bloated even after a small meal. I get terrible heartburn after certain foods (breads). I am usually more full 3 hours after a meal than right after I eat. It feels like it takes hours for me to digest anything. I haven't been cooking for my family lately because after I eat lunch the thought of food makes me feel ill. My iron levels are just below "acceptable" and I can get very lethargic. Especially after eating certain foods.

I haven't been to my doctor yet nor I have I suggested this to my rheumatologist, he seems to like the drugs. I am going to call my regular doc today to make an appointment but I am afraid and not sure what to tell her. Is she going to think I'm nuts? Some people are saying Gluten Free is the new diet fad and everyone thinks they have a gluten intorerance. I know I have something going on but for some reason I'm afraid to mention Celiac.

Any input with be greatly appreciated!

Christine

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Lisa Mentor
Lisa
Posted

Christine,

Welcome to the Board! I am sorry that you have had such problems at such a young age. Perhaps you have found some answers here.

The blood panel for Celiac is simple and I think that you should pursue this. Many of your symptoms may indicate Celiac. Many people are diagnosed with Celiac after other ailments are apparent.

Review this site and print off whatever information is pertinent to you and bring it to your doctor. I know that many doctors are not happy when patients self-diagnose from the Internet. But you have to educate yourself and sometimes we have to take our health into our own hands.

I have heard that the Gluten Free Diet may becoming a "fad" diet. That is both good and bad for those of us that are in need of this diet for medical reasons. Never the less, it does bring on awareness.

Please request (require) your doctor to run a Celiac Panel. Although, they are not always accurate. It can rule Celiac in, but not rule it out. If your blood work is negative, you can then pursue the diet and see if you have positive dietary results.

You may have found something that can change your life, for the better. Good luck and if we can help you in any way, just ask.

CarlaB Enthusiast
CarlaB
Posted

I would get tested for celiac disease. Do not go gluten-free until after the testing.

I would also get tested for Lyme Disease. Please research it before testing as the test your regular doctor would use is inaccurate. Here is a thread on Lyme Disease Open Original Shared Link=

You can also get more info on Open Original Shared Link. You might post your question there, too. Both diseases have similar symptoms.

The rashes I got from Lyme were generally on my scalp ... they weren't as severe as DH looks, but they were a little blistery looking. I also get joint pain, though the rashes have already gone away with treatment. I also have the same problem with iron levels ... nothing alarming, but I feel overwhelmingly fatigued.

Good luck with your search. Don't give up until you find answers.

mftnchn Explorer
mftnchn
Posted

I fully agree with your getting tested for both of these diseases. I hope you will keep us updated. I can relate to the arthritis although mine has not been deforming. Also I think lyme arthritis can move around the body a lot, like even change over a few hours. That's what my arthritis did. However, the arthritis meds didn't help me at all. I finally lived on aspirin for years (high doses) until my lyme diagnosis.

Soconik Newbie
Soconik
Posted
  • Author

Thanks everyone! I have an appointment today with my regular doctor. I have printed up a word doc. from stuff I've cut and pasted both here and other places that I will show her. I also made an appointment with my rheumotolgist for Sept. I would really like to get into the Mayo. I am only a 1 1/2 hour drive from it. I read some posts under the Doctors forum about a great doctor that spealizes in Celiac. My rheum. did his intern there so I am hoping he'll recommend me. He's told me he's never seen anything like my arthritis in anyone so young. I also read some posts about people with RA (very similar to Psoriatic Arthritis) who said you still should do the Enbrel to stop the progression, then do gluten-free, then slowly get off the Enbrel. UGH. Not only do I hate the drugs but my mom gives me grief even when I take a NSAID!

Anyway, if a diet can help me get my body back (as in stopping this chronic pain) I will be very happy. I feel like I am slowly falling apart from the inside out so survival mode as kicked in and I need to figure this thing out. I have a 2 and a 5 year old and I can barely keep up with them. I never wanted to be a "tired mommy" but that's how I feel most of the time.

Christine

CarlaB Enthusiast
CarlaB
Posted

I think you're on the right track taking this into your own hands. Mayo might be a good idea, but keep in mind that both Mayo and your regular doctor will totally dismiss the idea of chronic Lyme Disease. You would need to read the faq's at Open Original Shared Link to understand why. The thing is, you need a doctor who will do an unbiased differential diagnosis, and if they leave out the fastest growing infectious disease in the country, which also is known to cause all your symptoms, then they are not ruling everything out.

I think it's good that you look into celiac and RA. But, keep in mind that it is NOT uncommon for someone of ANY age to have arthritis from Lyme ... my 14 year old daughter does!!! Plus, those children in Lyme, CT who were all diagnosed with juvenile RA before discovering that they really had Lyme Disease ... Lyme is named after them ... Also, keep in mind that Lyme should be ruled out before treating for RA because the RA steroids will make Lyme significantly worse and harder to treat if it's what you really have.

I have days that I limp from the severe joint pain in my knee and hip. Granted, I'm older than you, but 44 is still too young for this. I can say, I am SO glad I'm getting better so that I can enjoy all that motherhood has to offer!

Joint pain is also a common symptom of celiac disease and candida overgrowth and many systemic illnesses. It truly scares me that your doctor thinks it's so uncommon for a young person to have it.

Soconik Newbie
Soconik
Posted
  • Author

Thanks Carla,

I have been checking out the links you gave me. RA has been ruled out. I had a battery of tests done last year for such things as RA, Crohns, etc. so that's how my doctor came up with Psoriatic Arthritis although I have extremely mild psoriasis so it makes me wonder. What ever I have though is definitely auto immune.

Isn't crazy how we have to demand tests to be done us? The doctors seem to think they know our bodies better than we do. Thank God for the internet!

Christine

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CarlaB Enthusiast
CarlaB
Posted

Christine, if it weren't for the internet, I'd have one foot in the grave, maybe two!!!

Even in the face of a positive, highly positive Lyme test, my doctor INSISTED that I had Somatization Disorder. Ugh.

I've had problems with rashes that look like blisters, mainly on my scalp and some on my face near my scalp ... but they've all gone away now. I had them for years ... I thought they might be DH, but clearly they weren't!!!

Good luck on your search, keep me posted, okay?

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