Ups And Downs

[kate1]

Hello all,

New to posting not to reading.

I was finally diagnosed verbally the week before christmas with coeliac.

my problems started way back last march with bone pain, fever , weight loss and the big D on and off but my doc didnt seem to know what was wrong.

She sent me for dexa scan as I was underweight and they found osteoporosis.

I kept being in pain even though they gave me calcium vitD and i asked why I was still in pain if Osteo was a silent disease (no pain unless a fracture) she didnt seem to know, this went on for months.

I asked for a referral to endocrinology as I already have underactive thyroid and my meds were really bothering me or not working.

She wasnt pleased but did it.

The specialist there was wonderful did lots of bloods and the antibodies were really high when 6 weeks later I got the results.

I tried cutting out gluten in this time and the results in two weeks were amazing.

Then I got a letter to go for an endoscopy and after all I had been reading knew I had to go back on the gluten to do this.

Hardest thing I have ever done....I was really ill by the time the endoscopy came round in Oct.

The day that was done I cut out gluten for good so was 7 weeks into gluten free when I was called for results of biopies.

The intestines were totally done in and the villi flattened and blunted.

I dont seem to be getting better this time round as fast as I did in those two weeks that I tried it, as if going off it and back on as made me even more ill.

Things are getting better though.

I am tolerating my thyroxine better, I have put on a liitle weight I was stick thin the D has stopped, most of all the aching and bone pain has mostly stopped which I now know was the coeliac not the osteoporosis.

I have had to cut out dairy as I was getting itchy little prickling feelings on my skin and feeling not well.Its been 10 weeks gluten free now but still not back to how I was.

They seem to think I have had it a good while (silent) but I always felt really well till last march.

A couple of questions I have is

1) what makes you suddenly go from symptom less to really ill?

2)one of my first symptoms was my feet really swelled one day after going in a cafe eating then walking a lot.The feet started to burn up on and off at nights but my feet now still do that sometimes but the other thing with them is the awful red patchy skin that seems to have come on them on the tops.

its under the skin sort of looks like psoriasis but there is no itching no breaks in the skin and no spots this started at the same time then came the fever the weight loss the big D etc so I feel its related to the coeliac but the feet are not better.

I have had my VitB tested and while its not optimum its in range at 300 and something.

my vit D is ok too.

my thyroid test is ok too I am baffled what can be wrong with my feet.can any other allergies or lack of vits cause the feet to do this?

I have just found out too that I cut out milk and dairy and replaced my milk with rice dream weeks ago to find that it may have traces of gluten. grrrrr!

This is a woderful site and you have no idea how much I have learned from coming on here and reading your posts.

I am pleased to meet you all and hope to post often.

I dont take anything for my Osteo at the mo as the Fosamax (alendronic Acid) here in england made me really ill and the specialist agreed that I could wait and see how I responded to the gluten free diet.

Thanks for reading and listenin and its nice to chat with people in the same position as me as sometimes think half my friends and family think I am on another planet sometimes.

[eatmeat4good]

This is my new best friend too. I can't wait to come here every nite and see how others are doing. I was sick for so long. 4 months into it and I almost feel normal. It is miraculously amazing to me and I look forward to the rest of my life and dovorce the last 7. It sounds like you are on the right track. Hang in there and good luck.

[Fire Fairy]

Hi Kate1 I'm new here too. I was diagnosed November 2nd. My Dr said and I quote, "I've suspected this for some time." So glad he finally shared his suspicions. Honestly from what I've read from others I'm very proud of my Doctor for figuring it out. I had a lot of symptoms I completely ignored and never even mentioned to my Dr. The symptoms I complained about were severe Migraines, joint pain, dizziness, tingling in my face, nausea, short term memory failure, brain fog (though I didn't know the phrase), and depression. To be honest I was very scared because my Grandmother had multiple strokes and developed Alzheimer's, I feared that was where I was heading with all my mental symptoms. I also had a great aunt (I look a great deal like her) who laid down with a migraine one afternoon and never woke up. She was only a little older than I am now.

I feel so much better since I've gone gluten free. I feel like I've been given a second chance at life. This board is a wonderful forum with a lot of very knowledgeable and supportive members. I wish I could answer your questions but I'm afraid I don't know. I'm sure someone here can give you some answers.

[Skylark]

Hi, Kate1. I'm glad you decided to post.

I'm sorry to hear the gluten challenge made you sicker. Unfortunately that's happened to other members of the board too.

Celiac triggers can be all sorts of things. In my case it was a really bad flu. I just didn't ever feel the same after and was diagnosed with depression nine months later. Turns out the depression was from celiac. People have celiac show up after accidents, pregnancy, food poisoning, or a period of severe emotional distress. Sometimes celiac just mysteriously appears but with your fever I bet you got some kind of virus and it triggered the bad symptoms.

I don't know about your feet. Celiac can cause all sorts of problems. I hope they start to get better after you've been on the diet a bit longer.

[kate1]

Great to meet you all,you forget sometimes just how many symptoms you had or what you never associated with this thing till you read on here and then you think oh yes .....the itchy ears I had those!!!

The anxiety was awful ,I am really layed back now compared to last year, I got upset at the silliest things and really anxious.

Thats how I know now when I am glutened, it hits my neck first and my shoulders and lower back my face is a scowl and I get anxious and clumsy,then follows the big D and the stomach troubles.....3 to 4 days and I am ok.

I found out about the dream rice purely by accident really as they had run out of stock at my shop so didnt have any for almost two weeks ,the day I got some more I knew for sure that everything I ate was fine and that was the only thing I had used new again that week, so I came online and looked it up on here and on the rice dream site and it is processed with barley and although they claim the enzyme is removed and what is left is safe ,that people who are really sensitive should avoid it!

I was aching all night that night.

I am looking for alternatives here in england, tried provemel but it has a sweetness and a taste I dont like.

I am hoping I can go back to dairy eventually but have reacted to egg white for years and just throw up and think thats the proteins in the egg white ....so maybe the proteins in the casein is my problem too.

I want something that tastes as near to milk as any....does almond milk taste nutty?

Soya is not too good for thyroid and I have had some but need to stay away from it in big doses really.

people say to me I really admire you adapting like you have done to going gluten free but when I think back to how I felt last year and how I used to sit and cry thinking that I was going to feel like that forever I accept it and embrace it and if you look around there are always things that are gluten free to make up for the things you miss and an answer to everything.

I just thank god its an illness that can be solved in the main with diet and we dont have to have more meds for it.

[mushroom]

Almond milk, of course, does not taste like cow's milk, but I love it, especially on cereal. You really do not notice the flavour in sauces and cooking. Can you get hemp milk in England, because that is my favourit?

[T.H.]

1) what makes you suddenly go from symptom less to really ill?

I don't know that I've ever heard a definitive answer, but it seems like a broken bookcase kind of analogy to me. You might have too much weight on a bookcase and it all seems fine until it collapses. But it's been under strain the whole time.

2)one of my first symptoms was my feet really swelled one day after going in a cafe eating then walking a lot.The feet started to burn up on and off at nights but my feet now still do that sometimes but the other thing with them is the awful red patchy skin that seems to have come on them on the tops.

its under the skin sort of looks like psoriasis but there is no itching no breaks in the skin and no spots this started at the same time then came the fever the weight loss the big D etc so I feel its related to the coeliac but the feet are not better.

...can any other allergies or lack of vits cause the feet to do this?

I would think that allergies could, yes. My friend has bad eczema from allergies, could that be something related?

Another couple oddball ideas:

1 - parasites? I know that they can be affected by diet, and that die off can cause odd problems within the body.

2 - Do you live in the Southwest US (or Sacramento, CA area) or have you visited there within the last few months? Or do you have anyone close to you who has visited these areas? There is a fungus-based disease that you can inhale called Valley Fever. You just have to walk in the wrong place and breathe at the wrong time, and a spore can attach itself to clothing, too, so a friend could pass it along. I know that there is a skin reaction in some people when the body is trying to fight this off. It involves swelling, and oddly, it only occurs below the knees (really weird). I don't know if your rash would qualify, but if you had this disease, if you are immuno compromised your body can not fight it off properly, and then going gluten free, your immune system might finally recover enough to start fighting it off, hence the skin issue (I'm sure there are pictures of this on the web, if you look)

This isn't a common disease, so doctors outside the SW usually don't know about it. And even doctors IN the SW can miss it. However, it's a longshot. Just figured I'd mention it, because of the location of the skin problem

[Skylark]

I don't know that I've ever heard a definitive answer, but it seems like a broken bookcase kind of analogy to me. You might have too much weight on a bookcase and it all seems fine until it collapses. But it's been under strain the whole time.

If I understand what you're saying, it's not consistent with what experts say about celiac. I saw an interesting lecture by an immunologist who talked quite a bit about the process of developing celiac disease. There are people who are celiac from birth but a lot more develop the disease later in life, particularly after an illness or stressful event. Surgery, childbirth, major injury, severe illness -- events that strongly affect the immune system are common triggers. Basically, you have a perfectly normal intestine in a person who happens to be DQ2. An illness or major stress triggers a change in the immune system and the person develops celiac. The process is presently under study as far as which cytokines are released, how the toxic deamidated gliadin is formed, and why deamidated gliadin triggers autoimmunity against TTG.