joolsjewels

Dissappointing Day: i went to my fibro dr today and told her about the last 6 weeks. She looked right at me and said, "Well, I am sorry that things have been going so badly, but there is nothing else I can do for you. Just continue looking for the medical causes."!!!!!?????? No advice, no general direction, just continue with what you are doing. Thanks! I started crying in the office as i was so frustrated ( i rarely cry in front of others).

The "good" news is that i have arthritis in my right foot too!

What kinda of reaction did you have to peas? Bloating, extreme gas? I had those problems a few summers ago with peas, but also with carrots and tomatoes. It turned out to be sugar and more specifically yeast overgrowth. The sugars, even natural sugars in fruit and veg, caused a painful explosion in my digestive tract. Even soy milk and rice milk have sugar. I had to take a digestive supplement and go on a sugar free diet for 2 months. That meant small bland meals and often so my blood sugar would not drop too low.

I have an appt with my fibro dr tomorrow. I have several questions for her. Maybe i can make some headway as well as an upcoming sleep study.

Hopefully, the sleep study will be this week. I think i am going batty. What probably compounds the problem is that we only have one car. My husband uses it for work and is working alot. So he gets done with a job, calls me to see if i need anything from the store, picks up a few groceries, and like tonight got home at 8:15. This is pretty normal so i am stuck in the house except for dr appts. I hear you about getting out for some sunshine.

I do have an appt with my dr concerning my fibromyalgia. I hope to bring up some different things with her and talk about different treatments other than meds.

Feeling like crud today. I can not decide if its just pms or i am just having one of "those" days. I am still having problems sleeping. I went to sleep at 8 pm then woke at 11pm. I tried to go to sleep at 2am, but emotions got the better of me. Now who knows if i will sleep and who knows what this is really about. Maybe i am just exhausted and overwhealmed. Next week i have more dr appts and more tests. I am beginning to hate it. I know they are run some tests and the tests are going to come back negative. What really got me down tonight concerns my parent's flighty support in my life. I get blamed for the most insignificant things or dumped on with everyone's problems. Then when i need support and their faith in me, i get ripped to shreds. I am sorry for venting, but with it being 3am there is no one with which to comiserate.

I also contacted Biolage about their hair products. Some contain soy. Some clearly state on the website that they contain wheat. I have asked about other specific products that i use via email. They are prompt in their responses and give concise answers. The ones i use do not contain gluten. Hope that gives you another hair care option.

Julesglutenfree.com has a great thanksgiving cookbook. My first thanksgiving was intimidating, but this cookbook helped so much. I make all the fixins, but pick up the turkey from Boston Market. It saves so much time.

I just got back some more bloodwork. My creatinine which was originally mildly elevated came back normal this time. Yeah no kidney probs. I have had stones in the past, but nothing since 2005. However, my cholesterol is extremely high. Starting cholesterol meds asap. I also have a stress test wed. Then another sleep study later on. Crazy things have been happening lately. Hope to get something figured out soon.

In general, do not waste your time on olive garden's Gluten-Free pasta and sauce. It is so nasty! My dad was in the navy for 24 yrs and i have had better pasta on the ship when we visited him. OG's pasta was mushy and the sauce tasted of ketchup. They do prepare it separetly in the microwave and i did did not get sick from the few bites i ate. The manager agreed with me that it was the worst thing on the menu. She was gracious enough to remove it from my bill, but why serve it in the first place. I contacted corporate, but they stood behind their product. I just do not want anyone to waste their time eating this. It is by far the worst Gluten-Free meal i have ever had.

If your girlfriend has to change makeup, clinique is a good option. I call them and ask about each individual product that i use. They always tell me what allergens are present in each product. They do not claim to be Gluten-Free, but none of the things i use have turned out to contain gluten. Some do have soy, but that does not bother me. The hotline numbers are 1-800-419-4041 and 1-866-707-2100. The are very helpful.

My gp is waiting to change any of my meds until after my stress test and then another sleep study. But i will keep those meds in mind.

Gottaski, you asked about exercise- i was able to walk 4 mi everday until feb. All of a sudden my fingers turned blue. That night i woke up in the worst pain of my lfe and my feet were swollen. Since then, i can only wear flip flops due to swelling and pain. Drs have tested me for lupus, sjogren's, RA, etc. Nothing ever fits completly nor i do test positive.

CeliacAndCfsCrusader,

Thanks for the info. I currently take ambien and feel like i have been beat up. I have had fibro for about 13 yrs, but it intensified a few years after having walking pnuemonia. Recently, the symptoms stepped up again. In the past year, i had two severe sinus infections ehich require strong antbiotics and steroids to clear up. I am wondering if it is b/c a few drs are stepping me down off some meds. Maybe taking those meds for so long had masked some of the symptoms. Idk.

I have a stress test set up for wed at 9:45am. I hope that the symptoms do show up so the drs see how i feel.

Oh, someone asked how long i have been Gluten-Free-3 1/2 yrs. I am very consistent about it. The only times i have been contaminiated are accidental. About different foods eggplant-the oil makes my stomach sick. I use to eat sweet potatos a lot, but now there is something about them i just do not like.

I do have fibromyalgia, but this is weakness rather than just pain. Other conditions include: pcos/infertility, sinus probs, migraines, high blood pressure, joint pain, dry eyes, photosensitivity, acid reflux, nights sweats and chills, swelling in my feet and pain without redness, endometriosis, low vit d, low iron, gluten intolerant, lactose intolerant, and msg hates me. My SED rate and ANA mildly elevate occasionally. I also have cognitive problems like seaching for the right word, even very simple words, the inability to spell correctlly (hence the title of the topic-i knew it was spelled wrong, but did not know how to correct it) , and i am unable to do simple mental math computations anymore. I have forgotten most of my times tables even though i have tried several times to rememorize them. My latest headaches are just constant rather than say a migraine which is slamming or pulsating. These do not go away no matter what i take..

I just had my thyroid tests done last week. They ran a full and complete set of tests. Everything was "normal". I am bed bound. For instance, its takes me hours just to work up the strength to take a bath. I just did that. Now i feel worse than before. I can not get off the couch and it will take hours before i can do anything again. My arms and head feel like lead weights.

Does anyone have CFS? What are your symptoms? Who long did it take for you to get diagnosed? What other health problems do you have? Have you seen any improvement?

One by one, my dr is ruling out problems and adding minor things to my ever growing list. In researching CFS, it sounded eerily familiar. The symptoms are naerly word perfect.

Please share any experiences. I would surely appreciate it.

Oh forgot, someone asked about hobbies. That made me smile. I cross stitch. I think that is gluten free;)

I found out from my lab work that my iron is low. Dr wants me to take 325 mg/day. My vit D is low. I need to take 1000 IU/day. Finally, my A1C is being run and i need to go back in a week to get my kidney function retested as it is running a bit high.

To the other questions, i am very strict about using Gluten-Free hba products and meds. My husband, not Gluten-Free, does help me keep the kitchen as clean as possible. Any meals eaten together are Gluten-Free. He does use as many Gluten-Free hba products as possible. Our pets are rabbits and do not require baths. Their cages contain pine chips. I have had allergy scratch tests. I am allergic to many things, but not rabbits or their foods. Will start allergy shots for the other things soon. I have eliminated other allergens from my diet and never noticed any difference.

My dr did change my med to pristiq and take labs. So time will only tell if this works and what outcome there is from the blood work. In the long run, i just need to work up the courage to get some counselling.

I tried wellbutrin before and let me tell you i will never do that again. I had every side effect you can name. I am going to ask my GP for a couple names for psychiatrists when i go in.

What are your endo questions? I have gluten intolerance, endo, and polycystic ovary syndrome. A gluten contamination reaction comes quickly after the offending food is eaten. The symptoms are stabbing pain in the stomach, stomach cramps, diarreah, nausea, body aches similar to the flu. Whereas endo symptoms are more lower back pain, (sorry for the next few) deep pain during sex and sometimes after, diarreha (sometimes bloody) during your period, heavy and prolonged periods. For myself without meds, i will go for a month and a half at a time to the point that i can barely get out of bed. I think the blood clots are the worst. I know that sounds blunt, but you did say you have questions. Lysteda is a great med that is taken the first 5 days to help break up the clots. In turn, it eases the cramping. If you have any questions, feel free to ask. You can even message me about specific info.

Wow this thread goes way back. My mom and i both have fibro although she has never been diagnosed officially. I also have gluten intolerance, lactoce intolerance, insomnia, migraines, and restless leg syndrome. There are some other problems, but that is what relates to this post. My experience with fibro started in college. Over the winter of my junior year, i realized that my feet were painful in the morning and i had to hop down the stairs of my apartment. Years later as a sign language interpreter, i had to give it up b/c i was in too much pain in my hands and arms. After that i started teaching at a private school. There were days when i felt so dumb. The fibro fog was so bad i could not remember how to spell simple words on the board and my sentence construction came out all wrong. Most of the students were understanding, thankfully. It got so bad that the pain was preventing me from sleeping at night. I was only getting 4 hrs out of every 36hrs. I went to my principal and told him about this. He was shocked b/c i hid it so well. I asked if it was ok if i took short naps while the kids were at electives. He was very supportive. Later that year i was laid off and lost my medical benefits. Since going Gluten-Free in 2009, i have had times of relief with the fibro and times of flair ups. Last year around time, i was doing great. I lost weight. I was walking 4 mi each day. While walking one day in feb, my fingers turned blue. That night in my sleep i woke in the worst pain in a very long time. My feet were swollen. Since then i have been tested for sjogren's and in the past lupus. No dice. The only thing that shows up is an elevated SED Rate (mildly) and in the past before i went Gluten-Free my ANA was borderline for lupus, but it has since come down. I recently was referred to a sports medicine dr who specializes in fibro. She is helping me get off some of my meds. I have had several drs who saw symptom, symptom, symptom, and kept perscribing meds rather than looking for a root cause. I hope this dr will give me a bit more insight. Right now the fibro fog gets me the worst. Ihave a very hard time processing info and remembering what i was going to do. I am very strict about my Gluten-Free diet so i tend to think there is something else going on to cause this or the years of going undiagnosed gluten intoletant could have permantly damanaged my body.

I think it is difficult for others to see what we have had to go through and do not want to admit that they might have a similiar problem. Both my parents and my brother have auto immune disorders which are associated with celiac diease. I too have suggested that they get tested just to be certain. Of course they will not. I really do hope your family get tested, but sometimes all we can do is be supportive.

I tried Biotin for a couple of months after several hair dressers recommended it. It actually made the situation worse! I too have PCOS and of course the thinning hair goes right along with that. Since my GYN put me on metformin two months ago, my nails are growing like crazy and are much stronger. I have not seen a difference in my hair.

MitziG, thanks for the advice about the vit deficiencies and horomonal levels. I have not had these checked in a long time. I made an appt with my gp for thurs. I already take prozac, but something else is going on as i adhere to a strict Gluten-Free diet. The depression has been going on so since June and i have rarely left the house. I am exhausted all the time and i just want to stay in bed. I guess i will see what the dr says.