Happy January!

[Courtney]

Hi, everyone!

I didn't expect it to take this long for me to get back on the board. I left Illinois to visit family in South Carolina on Christmas Day and spent all day this past Tuesday on the drive back. Then Wednesday I had catching-up and laundry to do, and yesterday and today I have been in all-day workshops before the start of the spring semester on Monday.

The internet at my parents' house is so slow that I could barely check my email, and I was competing for it with several other people, so I didn't get much access. I've been catching up on posts since yesterday. to all the :newbie:s I missed. I look forward to chatting with you.


My Christmas meals were not as big a deal as I had anticipated, thanks in large part to my wonderful husband, who did or oversaw the cooking for all of them. General attitudes were mostly as I had anticipated: Mom sad that I have this, Dad not sure why I can't eat something that "may contain" gluten, etc. MIL fortunately (for me) has a close friend with Crohn's who has many food intolerances, so she understands a bit better now. I try to approach the whole issue with humor to deflect some of the awkwardness. I told my family, if they wonder whether I can eat something, to ask themselves, "Is it rice?" Grandma wants to know why they can't just give me a pill that will make me better--which reminded me that Entocort made absolutely no difference .

I am still trying to laugh about the "old people gifts" (no offense to any of you old people ) I received. Stephen got me a giant heating pad for my joints and my general cold-ness, and my parents got me arthritis gloves (which I am wearing now, they seem to help some), a fuzzy house sweater, and a space heater. I really do like these gifts, but I'm concerned about my ongoing need for them. I was diagnosed with fibromyalgia in the fall, and I have major joint pain in my ankles, wrists, fingers, elbows, shoulders, and occasionally in my hips. It's so bad and so frequent that I'm concerned about it; can anyone tell me how much pain is normal with this? I know that the cold here does not help. Fortunately, we will be moving this summer--not sure where yet, but definitely somewhere warmer. I have an appointment with a rheumatologist scheduled for January 28--hope to have more luck with her than with my GI!

Goals for January are---getting my down (Yes, it's still up!) and sending off my to Enterolab to see if I can get a few intolerances confirmed or denied and try to get my MC under control. And turning 27, which will happen without any extra help from me, so that at least is one thing I don't have to work on!

:happynewyear2009: (a few days late)

Love,

Courtney

[tex]

Hi Courtney,

Welcome back! And Happy January to you, too! I'm glad to hear that the holidays went pretty smoothly for you. The next time you see your grandmother, you can tell her that there is a pill being tested, seeking FDA approval, that might indeed solve most of your issues. I'm referring to Dr. Fasano's pill, of course, that was developed at the University of Maryland School of Medicine, and designed to neutralize the effects of zonulin. The clinical trials look very promising so far, and if it's approved for market, at the very least, it should allow celiacs, (and anyone else who is gluten-sensitive), to not have to worry about trace amounts of gluten sneaking into their diets, in the future. In fact, if they work as indicated, they may allow us to begin eating gluten again, without any ill effects, so long as we take a pill with every meal that includes gluten.

I have a hunch that once you get your MC symptoms under control, your fibromyalgia and arthritis will eventually become non-issues. Also, many of us have found that our rheumatologist seems to be much more knowledgeable about MC than the average GI doc - no kidding. (What does that say about GI docs, in general? LOL).

As far as how much muscle and/or joint pain is common with MC, we are all different in that respect, of course, and some members have mentioned that they have never noticed any significant pain of any kind, that they could connect with MC. For most of us, though, it can get to be pretty bad, during a severe reaction.

Speaking of "old people", , I was around during the 1950s, when three epidemics of influenza swept through the U. S. I can remember being as sick as a dog, and missing school for somewhere between two and three weeks, (as much as I disliked going to school, I probably viewed it as a vacation, LOL), either during the 1951, or the 1953 epidemic, (or possibly both, but only one was particularly memorable), because this strain was genetically linked with the 1918 "swine flu" that killed so many millions of people around the world. Anyway, this version, H1N1, was pretty rough, and I can still remember how badly my joints ached, and how persistent the vomiting and diarrhea and respiratory congestion was. Those epidemics killed millions of people, and then they were followed in 1957, by the H2N2 strain. I don't remember catching that one, or maybe I had a light case, because I had gained some resistance from the H1N1 strain.

Anyway, my point is, the joint pain that I experienced while I was reacting to MC, was at least as bad as any case of influenza that I ever had, and unlike the flu, I would feel better for a few days, and then it would be back, worse than ever. At one point, my knees become so inflammed that I had to use a cane, to get around, and I had to wear a pad on one elbow, and a finger guard on one little finger, because they were so tender that if I bumped them, ever so slightly, it would literally bring me to my knees. I hope that sheds some light on the joint pain issue with MC. Trust me, it will get better.

I'm hoping that you'll be able to celebrate your 27th birthday, pain-free, and D-free.

Love,
Tex

[annie oakley]

Hi Courtney>>>Glad you are back. We missed you. Ya some of those old people gifts we need but it does remind us of our age at times. I am so glad you have a great husband, Mine is dear but would have ordered out. But I didn't have to cook this year, Mi Niece and SIL did it all, for a change. Nice!! Take care Love Oma

[starfire]

Glad you are back and really glad your holidays went better than you expected!!!

I see we both are January babies. I barely made it for Jan but it still counts. HaHa

Love, Shirley

[JLH]

Welcome back. I am very happy that things at home went better than expected for you.

I never have had joint pain. I did have foot cramping and weirdness in my toes which seems to be getting better now that I'm taking the sublingual B-12. I read about it in a Tex message to someone else.

Hope to see you at chat.

[Gloria]

I'm glad to hear that things went better than you expected.

I have joint pain, but I'm considerably older than you, so some of it is due to arthritis. It is better than it used to be now that I've changed my diet and am on a small dose of Entocort.

I think your rheumatologist will be much more understanding of the relationship between your symptoms and what you are eating. Let us know how the visit goes.

Gloria

[Courtney]

Thank you all for the warm welcomes back and for letting me know your experiences with joint pain. I have not noticed any swelling or heat in the joints, so I take that as a good sign. Tex, thanks for letting me know how bad your joint pain was--that makes me feel some better. One of my interests, though not necessarily official specializations, is WWI and concurrent world events, so that link to the 1918 epidemic was interesting. I didn't know about the related 1950's strains.

Courtney

[JoAnn]

Hi Courtney, I'm one of the newbies from Dec. I noticed that you have hypothryroid listed under your name. I was diagnosed hypothyroid last year and it seems like my mc was developing at the same time. My current PCP thinks the hypothryoid brought on the mc. I don't know if anyone knows for sure, but I wonder how many others have thyroid issues along with this disease. I'm 56 so a lot older than you, but I still wonder about the thyroid and mc connection. I have experienced some joint pain which could be connected to both conditions or just aging. I hope 2009 is a healing year for you. JoAnn

[Courtney]

Hi JoAnn,

I think that somewhere on this board there's a poll in which people noted any thyroid problems they had, and as I recall, the rate of thyroid problems among members of this board is significantly higher than that in the general population.

I was diagnosed with hypothyroid in 2005 at the age of 23. I was lucky to be diagnosed so early--my mother had hypothyroid and was very sick while I was in middle and high school--she suffered for years and was over 40 before she was diagnosed. I remember thinking she was going to die. Anyway, I was being screened yearly anyway since her diagnosis, but I started "crashing" around 2:00 every afternoon, so they checked me again. I had developed what I now recognize as early symptoms of MC (chronic pain in the pelvic and abdominal regions) in 2003 at the age of 21. I had a laparoscopy to check for endometriosis--that was negative, but they did remove adhesions attaching my lower sigmoid colon to the abdominal wall. Chronic D developed in the fall following the laparoscopy in July. So, yes, thinking about it, I would say those issues developed concurrently, although I don't know if one caused the other. Hypothyroid is typically associated with constipation, not D. I think it's more likely due to the tendency of autoimmune diseases to cluster. Lucky us!

On a side note, I've always been able to tell when my thyroid levels needed to be checked because I would get serious pain in my forearms. Just a thought.

Hope that tells you something!

Courtney

[JoAnn]

Hi Courtney, I'm sorry you have to go through all this at such a young age. You sound like you're handling it all very well and with a great attitude. (Better than me!) I really feel for your mom suffering all those years. Thyroid problems can cause the most frightening symptoms and can make you feel like a stranger in your own body. So can mc. It's good you monitored your health and have received treatment early on. Getting the right dose of levothyroxine has been a tricky journey for me. I'm only on 50mcg, but even that made me hyper over the summer when I changed brands. (Long story) I seem to be very sensitive to medications and am the side effect queen. Thanks for sharing the information. You'll be in my prayers and I wish you the best of health and healing. JoAnn

[tex]

JoAnn,

I was on 50 mcg of levothyroxine, also, but after a year, with good labs, but only partial symptom resolution, I asked my doc to switch the prescription to Armour, (I believe the equivalent dose is half a grain, if I recall correctly), and it seems to work better. Armour is an old, natural thyroid supplement, which not only contains T4, but it also contains T3, (and T2 and T1, for that matter). All the other thyroid supplements, (such as synthroid, levothyroxine, etc.), contain only T4.

Many doctors refuse to prescribe Armour, because about 30 or 40 years ago, it varied in potency, from batch to batch, and some uninformed doctors still consider it to be inconsistent. These days, though, if you look at the thyroid supplement recalls, you will see the major brands of the synthetic supplements being recalled for being "out of compliance", occasionally, but you aren't likely to see any Armour on that list. I'm not saying that it is better than levothyroxine, for treating hypothyroidism, but for some people, who don't get good results with the synthetic thyroid hormone supplements, Armour sometimes does give better results.

Tex

[Courtney]

JoAnn,

I'm also on levothyroxine, currently at 112 mg. 50 mg seems awfully low, but if you were going hyper on just that, then I certainly wouldn't raise it. Everyone is different. I was on the brand name Synthroid for about 3 years, but I recently switched to levothyroxine. I was wary about going on the generic bc I had heard that it didn't work as well, and I need my thyroid to work! However, I was assured that they've made improvements so that it works just as well, and it seems to be doing so. I'm due to have my levels checked again in a few months. I'm inclined to think everything's okay because normally I can't make it through the afternoon if my thyroid is low. My mom has been really lucky--as soon as she got on Synthroid, she was much better, and has continued to be so for the past ten or twelve years. She does have an obvious sensitivity to wheat, though--if she eats it, she gets very tired very quickly, although she doesn't have GI symptoms. I'm trying to get the rest of my family to get checked for celiac at least, but that is a long shot as none of them have symptoms. I told them at Christmas that, given my genes, it's impossible for me to be the only one in the family who's got at least a potential problem...but unless they develop GI symptoms, I doubt they'll get screened.

Thanks for your kind words.

Love,

Courtney

[tex]

Courtney,

If you want to try to scare your family into getting screened, you might mention that most celiacs are asymptomatic, but they run the same increased risk of lymphoma, and certain intestinal carcinomas, as any other untreated celiac. As Dr. Fine says, the diagnosed cases are just the tip of the iceberg. It you order the gene test when you have the tests done at Enterolab, the results will tell you whether you inherited a celiac gene from only one parent, or both of them, which should offer some insight into the probabilities of additional cases being present in your family.

Love,
Tex

[JoAnn]

Hi Tex and Courtney, thanks for the info. I am really a weirdo when it comes to thyroid symptoms and meds. I had severe symptoms with a tsh of 5.0 a year ago. My dr put me on a generic levothyroxine by Lannett and I gradually improved but still didn't feel great. Around May, we decided that the 50mcg was the right dose, so I started ordering it from my mail order insurance MEDCO. They sent the real Synthroid. I thought, great this will be better because it is the real deal. WRONG! I had every hyper symptom on the warning label with D. (I didn't know I had mc until Aug., so I don't know what was doing what at that time.) I went back to my doctor, she did tests, said they were normal and that I should be feeling fine. I was feeling terrible! She said we could try something else. We tried Armour, but nothing improved-I got worse. We finally went back to the old generic by Lannett and over time I stabilized. (I also changed doctors and go to clinic that is more holistically minded.) My numbers looked good last Nov. (tsh .663, Free T4 1.39 range .61-1.76, Free T3 3.0 range 2.3-4.2) When I went in Dec, she wanted to add 5 mcg of Cytomel (T3) thinking it might help my colitis. I am so afraid of going hyper though, (I ended up in the emergency room last summer) that I haven't taken it. I go back this Friday to get new lab results. I feel horrible without it and I fell horrible with too much. I seem to need a small, particular amount. Maybe the Armour would have worked if I had of had a better doctor at the time. It's so hard to find a good thyroid dr and mc dr. I appreciate your input and I still feel like I'm working through this thyroid thing along with the mc. Have a good day, JoAnn

[Courtney]

Tex, I'm going to copy and paste your message into an email to my family, if that's okay with you. I had the genetic testing done this summer through my GI. I had two of the most common celiac genes, which I've posted somewhere around here. My possibly flawed understanding of that is that I got one gene from each parent, which would not surprise me in the least. There has not been a non-Scotch/Irish ethnic on either side of my family since they immigrated to SC in the mid-eighteenth century.

JoAnn, hang in there! It can take awhile to get the right dose of thyroid hormone worked out. I'm sorry you've had so much trouble with it. I know exactly what you mean about the tests saying you should feel fine, and meanwhile you feel terrible. I've found that I have to say, "Look, I feel fine on 112 and horrible on 100." My PCPs have fortunately been really understanding about that. The other thing about it is that you can draw blood at one time and have one level, and then draw it an hour later and have another level. Frustrating, I know. Good luck.

Love,

Courtney