Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
momxyz

Back Again

Rate this topic

Recommended Posts

hi all, have not visited this forum in a while, mostly because life has been too chaotic. I have been working two jobs, while hubby got his feet on the ground after being laid off. This craziness, fortunately, will be ending soon, but safe to say, I have not had much time for social networking!!!

My daughter is doing great on the gluten free path, independently managing her own choices. She will be starting college in the fall... at a school where the kitchen emphasizes healthy options, and has a frig dedicated to gluten free items, and a staff willing to cook to order any entree, gluten free.

As for me, I confess I had an experience falling off the wagon....my rash had been progressively healing since last fall, and tho not all gone was much better. I still had a few leftover spots. The beginning of this past month was my birthday, and I was given a surprise party at work. I haven't discussed dietary affairs with many of my coworkers - the need has not come up that many times - and so the cake definitely was not gluten free. It was a chocoloate lover's dream however. I confess, I ate one whole piece.

Next morning I awoke, fully expecting intense itching. Didn't happen. Over the next few days, a few of the spots were very mildly exacerbated...maybe.

So I began to question the relationship between gluten and my rash.

End of the following week... another birthday celebration at work. By now I was very much at the "what the hell" point, and so, I indulged again. Over the next few days from that, itching was very much more pronounced, and the cherry red spots returned. I am almost two weeks out from the last indiscretion, and although things are starting to subside, I definitely took many steps backwards...

Silver lining to the cloud. Since going gluten free last August, I had not had a checkup with my primary care provider. (Going gluten-free was a decision I made on my own.)

So in the last couple of weeks I had that appointment, just about at the point my rash was really reactivating. So, I talked to my PCP, sharing with her why my daughter and I had gone gluten-free, what are observations were, and more pertinently, my recent rash reactivation post birthday celebrations.

she looked at the rash very carefully and then basically indicated that she believed me. Here's what she said.

First, that it was pointless to do testing since I had been (recent temptations not withstanding) gluten free for several months. Second, if I personally felt improved health from the gluten-free diet, then it was worth continueing on it. Thirdly, that my observations of what happens when I deviate from the diet (ie exacerbated rash) do constitute valid evidence; she supported a gluten free approach without question.

Oh yeah, and then there was this other piece that fits in with the gluten intolerant picture - I have a new diagnosis - osteopaenia.

So, she prescribed Vit D and Phosphomax (may have the spelling wrong) I am now taking Vit B supplementation, as well as additional Calcium. I have a recheck in August.

Not happy about the angry red spots on my legs, but am happy about my PCP's attitude towards gluten intolerance!

Share this post


Link to post
Share on other sites

Osteopaenia. I have that, too (in mid 50s). No doubt due to my long undiagnosed celiac disease and resultant inability to absorb calcium.

My doc also prescribed Vit D, along with higher dosages of Calcium. Fortunately, 10 months down the road, I saw an endocrinologist at the advice of a friend and the first thing she did was check my Vitamin D levels. They were SO below normal, in spite of the fact that I was taking supplements. I'd recommend your doc run blood test to check your D levels. They are crucial in the body's ability to absorb Vit C.

Just FYI, worth checking. (I now take prescription Vit D 50,000 i.u. once weekly- took 3 months of that level to get me into normal range.)

Share this post


Link to post
Share on other sites

oh yeah, she already did check Vit D! And my thyroid function. Both were low. and there was a parameter on my CBC that was a possible indication of Vitamin B deficiency. (I work in a lab, will explain that one on request)

So, she prescribed Vit D, thryoid replacement hormone, a biphosphonate drug (for the osteopaenia.) I had already been taking supplemental calcium and have now added B vitamins to my routine...

I am normally anti-pill, but I figure I have only been trying to be gluten-free for 10+ months, out of my 52 years... the effects of gluten in my diet over all those years is probably a gradual, cumulative one and will not be changed overnight. And, to be honest, some of this is also simply age related! (Can't get around that one completely.) The supplementation hopefully will be beneficial.

Share this post


Link to post
Share on other sites

Glad you are back. I have one comment - I read that Fosamax, which I think is similar to the suppplement you are taking, is contraindicated for Celiacs. There was a thread on this and some people wrote that they got very sick when they took it. Vit D and calcium are the recommended supplements for Celiacs. Your blood tests may be negative since you have been off gluten but there are fecal tests which are more sensitive offered by Enterolab.com - you can contact them for advice.

  • Upvote 1

Share this post


Link to post
Share on other sites

Enterolab provides no information at all on the sensitivity and specificity of their tests and their interpretation is not in line with the scientific literature.

Fosamax and other bisphosphonates are not contraindicated for celiac disease; however, you should be aware of a pretty nasty side effect. In some people, bisphosphonates can cause serious damage to the jawbone. It was first seen in cancer patients also receiving chemotherapy, but can also happen in people who get dental work like implants. The FDA has issued a class warning on all these drugs and you should have some information on the patient labeling that came with your prescription. It happened to my mother when she got an implant and she really,really wishes she had never taken Fosamax.

  • Upvote 1

Share this post


Link to post
Share on other sites

Enterolab provides no information at all on the sensitivity and specificity of their tests and their interpretation is not in line with the scientific literature.

Fosamax and other bisphosphonates are not contraindicated for celiac disease; however, you should be aware of a pretty nasty side effect. In some people, bisphosphonates can cause serious damage to the jawbone. It was first seen in cancer patients also receiving chemotherapy, but can also happen in people who get dental work like implants. The FDA has issued a class warning on all these drugs and you should have some information on the patient labeling that came with your prescription. It happened to my mother when she got an implant and she really,really wishes she had never taken Fosamax.

Alot of people can tolerate the fosamax and the other similuar durgs just fine. Be aware of the side effects and just watch for any unwanted symptoms. That said, my mother who has osteopenia/osteoporosis cannot take any of those drugs. She does not have any dental implants but did have jaw pain. They switched her to another one and her symptoms worsened and it started to deteriorate her tmj. She has been advised to not take any of them. After stopping the meds the symptoms went away. She takes calcium and vitamin D since she was told it was her only option.

Share this post


Link to post
Share on other sites

Osteopaenia. I have that, too (in mid 50s). No doubt due to my long undiagnosed celiac disease and resultant inability to absorb calcium.

My doc also prescribed Vit D, along with higher dosages of Calcium. Fortunately, 10 months down the road, I saw an endocrinologist at the advice of a friend and the first thing she did was check my Vitamin D levels. They were SO below normal, in spite of the fact that I was taking supplements. I'd recommend your doc run blood test to check your D levels. They are crucial in the body's ability to absorb Vit C.

Just FYI, worth checking. (I now take prescription Vit D 50,000 i.u. once weekly- took 3 months of that level to get me into normal range.)

I have Osteopaenia. Same reasons as you. My dr gave me Fosamax which I took for a month and stopped as I thought I four pills were enough. The Dr never said I should continue after that, lol.

I restarted and had side effects. I felt flu like, had the runs, my joints were sore, and I felt tired out. Needlss to say I called them and they said to try it again since I the first time I didn't notice any SE's. Jerks. Well I now read some of the posts here and you all just confirmed my thinking that Fosamax is not a safe drug.

What is a endocrinologist. The nurse there did say I would be better seeing one for better answers.

Thanks Boyd

Share this post


Link to post
Share on other sites

Just a quick note on the osteopenia. In addition to the Vit D and calcium also start a regime of weight bearing excercise. I have osteoporosis and refused the 'bone building' drugs for the reasons others have mentioned. We shall see if I have improved or at least stopped losing bone mass when I get my next scan.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×