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trayne91

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Hi everyone. New to the group. Hoping to learn from the more experienced. I was diagnosed with Celiac Disease last May after about 8 years of symptoms. After going gluten free, many side effects subsided, but many did not or only improved, but did not get completely better.

I ended up in the ER in August due to nodules in my stomach that were the size of marbles and soooo sore to the touch and pinching the holy heck out of me every time I moved. They sent me home telling me nothing wrong. Since them the deep aching soreness and cramping, especially in my legs is unbearable and I still get flare ups of nodules in my stomach area from the upper chest, ribs, sides to the groin and they hurt like heck. My obgyn sent me to rheumatologist who didn't seem to know much about Celiac and checked me for Lupus - negative and my Sed Rate which was elevated higher than it was pre-gluten free. I then seen my GI for my yearly exam on the same day who did a small bowel follow-through - normal and checked my Sed Rate - same day so elevated. I ended up at my GP who diagnosed me with fibromyalgia (my obgyn and GI were learning that way as well). I tried Cymbalta on Friday but had a bad reaction to it. Knocked me out for 3 days, dilated my pupils, I broke out all over my face, neck, back. Now I'm on my 2nd day of gabapentin 100mg at bedtime. We'll see how that goes.

It's amazing how many side effects cross with Celiac and Fibro - brain fog, tingling in extremities, cramping, migraines, etc. When I read the symptom list I just couldn't believe it as there are over 300 symptoms for Celiac and many are the same for Fibro. No wonder not all my symptoms were alleviated after going gluten free. I look back now and realize how much I cried as a child with leg pain and how a few years back I got a massage for the 1st time and told people I would never do that again because it hurt so bad. They obviously looked at me like I was crazy. Maybe I had this longer than I thought and the Celiac swelling hid a lot of it over the last years. I'm down about 30 pounds since going gluten free last year, but have not exercised one bit and eat more snack now than before. It was all swelling. I still have an inflammation problem and I know that but hoping I can work on it with my GP since my rheumatologist didn't seem to even think Celiac could cause a headache. I think he was more into arthritis.

Anyway, I am hoping to learn more about this disease and how to alleviate pain. My knee hurts me so bad I can't put my whole body weight on it and have to limp around. My legs cramp like crazy and sometimes feel like pins are sticking in them and they hurt so bad I cry. The nodules I get in my abdomen hurt and make me cry. My arms are sore, the back of my head, my face. I can't cross my legs, cross my arms or even rest my hands on my face let alone get a hug from my husband or accidentally bumped because it hurts, among other things... frankly, it sucks and I'm here for help, tips, tricks, and ideas, that help me get myself back, if that's possible. Thanks for reading.
 

1sweed

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trayne91,
Welcome to the forum. Gosh, it sounds like your really having a tough time. Just fibro alone can cause such pain and sore muscles, plus countless other irratating factors that ruin normal life that I can not imagine living with the effects of Celiac disease. Could you share a bit more about what this is and the symptoms you have experienced. Does removing gluten from your diet cure the worse symptoms or is there more to it?

Please join in by asking questions and giving answers to others. Members have shared a lot of really good coping skills that have worked for them in many of the topic sections. Be sure to read the pain management section, as well as, alternative treatments to get ideas on things to try. Of course what works for one person may not work for you but sometimes you get lucky and find a hint or suggestion that when you try it, it works.

I think the management of pain is the biggest problem with fibro. And it sounds like you deal with allergies to medications as well. One thing you might consider is when trying a new medication to ask for a two week supply to try the medication and start at low dose mg, till you see if it works for you. In the past I have paid for a month's supply and used a medication for three days and ended up having an allergic reaction to the medication and thus lost big time for the meds were expenive. I use Neurontin now and it works pretty well if I keep my stress levels down. Can you use over the counter medication? I use Excedrin Migraine pills for pain relief, usually only 2 pills a day, as they have aspirin in them which to much can cause other problems.

Look forward to talking with you more as you post around the forum. Hope you feel better soon. :)
 

trayne91

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Could you share a bit more about what this is and the symptoms you have experienced.

Sure. With Celiac, I experienced swelling of the hands and feet, asthma, migraine headaches, vertigo, tingling in the arms and legs, acne, recurrent yeast infections, inflammation, brain fog, thinning hair/loss (I actually think it's breaking), low vitamin D, swollen lymph nodes, bloating, diarrhea and constipation alternating, and probably a ton of things I am missing here. I just kept going back and complaining for years. I actually asked to be tested for the gluten on my last visit as they just kept checking my hormones and for arthritis. My bloodwork for Celiac came back 1 point over. I was diagnosed through biopsy after that. I now have my levels 4 points under. Yeah! Since going gluten free, I am down about 30 pounds, my abdominal bloating is way better (I don't look like I'm having triplets), my migraines subsided and I went off the meds, but I do still get headaches - just not the point of pressure and flu like symptoms, I only get a yeast infection if I accidentally gluten myself, I take 1000 IU vitamin D3 daily as well as a multi vitamin and my D is normal now.

I still have irritability, anxiety (forgot to mention that one), but the anxiety is better, tingling in my legs, brain fog (but it's better and is worse with anxiety). Add the severe cramping and tendor spots all over my body now as well as the painful nodules in my abdomen and tada! new disease. I was born with asthma but it got better as I grew. I don't use an inhaler. I'm fine. I just get congested if I run and have always been that way. I was diagnosed with WPW Syndome at 17 and had an ablation in 2005 for that. I had a hysterectomy in 2010 for fibroids on the uterus. Then I was diagnosed with Celiac and now the Fibro. I would ask anything else, but every time I do that, there ends up being something else. LOL

The gabapentin I am taking in the generic form of Neurontin. So far it seems ok. I'm only on day 2. I feel a wee bit tired or maybe slow is a better word, but not too bad. But, if there is anger or irritation it seems to send me into a spiral of a mood I have a hard time getting out of and I don't like that too much. Still sticking it out to see how it goes. The Cymbalta was the only medication I have been allergic to besides one other. I'm pretty good with medicine, but sensitive to it. I had to take Periactin for my migraines (antihistamine for children) and it worked because anything else wasn't agreeing with me. I have to be careful about gluten in medicine.

I'm going to go check out the rest of the board over the next few days as I get a chance. Thanks for the welcome!
 

trayne91

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I should also probably add here that my pulse which is normally about 60 was 84 at my last Dr. appt. My blood pressure is normally about 102/70 was 122/84 at my last Dr. appt. Guess I like 84. My Dr. didn't say anything about it. The nurse asked me about my blood pressure and told her I normally have very low blood pressure and I have even had to avoid certain medicines in the past due to it. She said pain can sometime cause it to rise. So, I am hoping bringing pain down brings down my heart attack risk at this point as this is scary to me and not good.
 

trayne91

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1 more thing - sorry, I keep remembering things. I did sleep 10-14 hours a night my entire life and have never ever woken up before 10am without an alarm clock. Since gluten free, I do wake up anywhere between 7-9 on my own for the first time in my life so it helps with fatigue a ton. Thought that was important to tell you. How removing gluten helps fibro, I don't know since I was diagnosed after gluten-free and I am in a lot of pain, obviously.
 

1sweed

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Well it sounds like the gluten free diet is making a big difference in your life. I know in my own life switching from the old standerd of eating lots of meat and sweets, to a diet of veggies and fresh fruit, and very little meat and sweets, has given me more energy. Sometimes when I eat sweets I get very lazy and sleepy, so I tend to avoid eating these things to often. Just dropping some of the heavier in fat meats made me feel better as well.

I have heard a few members talk about doing total body cleanses, and I wondered if you had tried that or not? A friend of mine uses these products that contain lots of herbal ingredients, but are very expenive to use. Some of the medical ones are very harsh on the body. I wonder if these products are worth the effort and the days spent in the bathroom. lol Any thoughts on this? :)
 

trayne91

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10/2013
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After reading fibro info, I thought a detox might be good. I would consider the one where you put your foot in the tub at the massage parlor and detox the body out your feet. Because of my frequent yeast and someone else mentioning their candida problem, I think I'm going to do a candida detox and caprylic acid and a garlic pill every day after that. I wonder if a detox (full body detox like you are talking about) rids you of your medicine that's in your body?
 
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