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floridanative

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About floridanative

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  1. They looked at them for shingles (problem was by the time I saw a doctor I had scatched them open with my hairbrush). Doc decided it was some kind of scalp infection so gave me an antiobiotic.

    I had to go to the doc three times (each time saw a different doc at same office) to get diagnosed for my shingles last year. But I didn't know to ask if I could have shingles.... In any case, even when I was finally diagnosed, the doc gave me so much misinformation about shingles that the neurologist (I had to see for the pain)

    was horrified. Almost everything the diagnosing doc told me about shingles was flat out wrong! She did not even know about postherpetic neuralgia which is what you can get if you don't get diagnosed swiftly with shingles. If you do have shingles (which I'm hopng you don't) you have to get the anti-viral meds in order for them to go away for good. Valtrex is what they give you in the US.

    And if for some reason you do have shingles and you are eventually in unimaginable pain, you need to see a neurologist to help you get through it with anti- seizure meds or something similar. And one more thing - shingles can NOT pass the middle line in your body. It will affect only one side of your body. So if you have bumps that are on both sides of the body, you should not have shingles.

    Good luck!

    Tiffany M.


  2. Stephanie,

    Good luck to you tomorrow and thanks for your post! While reading your notes I decided to call my Outpatient Center where I'm having my colonscopy this Thurs. too. They said they could do the biopsy when I was out with the other test. That will save me $250 so I'm thrilled! Another anti-body level came in three times higher than normal so now that's two blood tests showing I could have celiac disease. My dermatologist said it was better to have parasites but after that it would be Celiac as the next best thing after parasites. I don't even know if parasites can cause the bloating, gas and cramps I have occasionally.

    Anyway, for Wed. I'm having lots of chicken broth and also some jello (not red or purple you know!) because when I can't eat I like to feel like I'm chewing and the only thing we can have that we can sort of chew is the jello. Also, I'm having Gatorade hoping that will give me a little energy as I had to stop my iron pills last Wed.

    I wish us both a totally non-memorable event regarding the actual tests and I hope we both get badly needed answers to what's going on with our bodies.

    Take care and let me know how it goes.

    Tiffany M.


  3. Hi Paula,

    Looks like our experts haven't posted to your inquiry yet. Most of them know more about Celiac than most doctors do. Anyway, from reading their prior posts about testing, I understand that you have to be eating gluten to test with blood work or the biopsy. But eating a gluten-free diet is also a valid test to show if you are affected negatively by it or not.

    More experienced members will get back to you soon I'm sure. Good luck to you.

    Tiffany M.


  4. Well all that would definitely be able to trigger your celiac disease gene if you have it. Or really just one of those things could have done it. So sorry for your loss.

    I too want an answer. I certainly can't take iron pills forever. Plus now I found out there are other things I'm not absorbing correctly. Of all the things that could cause malabsorption, my dermatologist (best doc I have sadly) told me he hopes I have parasites because the next best thing to that is Celiac desease and after that it's all downhill from there. He said 'if you don't have parasites you should be happy to have celiac disease. You can treat it with diet alone' blah, blah. I know he's right but we eat out a lot and travel a lot. This is fairly hard to do while eating a gluten-free diet from what I understand. Guess I'd rather worry about that than get chemo treatments for something horrible.

    Take care,

    Tiffany M.


  5. I'm new too and waiting on testing myself. But I was wondering if you had anything particularly stressful happen before the time you noticed your symptoms. About 38% of us have the Celiac gene but it's not necessarily active. Something can trigger it and walah - you get sick - sometimes even without symptoms. I had shingles at 40 and never felt right after. Since then I know my unexplained anemia is due to my not absorbing nuturients properly which happens frequently with celiac disease but I have to rule out more serious things before my doc will do the biopsy to test for celiac disease. So all this is to say if you did have something stressful (death in family, divorce, sick kid or even moving to a new place) happen, it could have triggered your celiac disease gene IF you have it. Good luck and I hope you feel better soon!

    Tiffany M.


  6. No - I am not confused now and do feel better. I did think my doc was making sure something really bad isn't wrong re: the colon and then if not, we'll do the biopsy next. I guess I just hate the waiting part. One of my worst traits is my impatience.

    Thanks to all who responded and take care -

    Tiffany M.

    p.s. I just found out today from reg. doc that my homocystene level is way out of wack (11.1) instead of 3 or 4. Does anyone know if there is any way this is related to celiac disease? I had the test at my Dad's Cardiologist insistence to see if I need a rx of folic acid. Anyway, let me know if anyone out there has heard of this test being related to celiac disease. THX!


  7. Thanks Lisa B. So far only one anti-body level is way too high, causing me to have malabsorption issues. This at least explains my anemia which was to date unexplained. Now after reading about Celiac disease I'm hoping maybe I have a parasite infection which can also cause malabsorption and seems like the best thing I can have that does. My husband and I don't have kids and we love to travel and eat out frequently. I don't see how I can enjoy traveling anymore if I have celiac disease. I'm getting pretty depressed just thinking about it.

    Tiffany M.


  8. I am very perplexed. I'm glad on my second visit to the GI doc he told me about Celiac Sprue but he explained that it was an allergy to wheat and didn't even mention the word gluten. So now after reading up on the condition I feel like I know more about it than him. So the same doc is making me have a colonoscopy before doing a stomach biopsy. I'm sure there's some sort of insurance protocol he has to follow. But does anyone out there know if a colon exam is going to show any signs of gluten prolems - if I have any that is?


  9. Sorry this post has no helpful information in it but I just had to share. It seems as though most of my make-up/toiletries must be tossed and replaced with gluten-free things. So I have e-mailed and called a slew of companies to inquire about their products. So one company got back to me via e-mail. Their letter was very professional and it was signed 'The Consumer Affairs Team'. However there was no indication anywhere at all (had my husband double check for me) as to what company the note came from. Their note was not a response to mine so I have no idea who they are. I let them know I needed to know their company name but so far no response. My guess is they are just a little embarrased.


  10. Just to share what I'm going through. I have unexplained anemia and so finally got to at gastro doc a couple of weeks ago. He took blood/stool samples and I went back last week to discuss the results. My blood tests revealed I am not absorbing nutrients correctly which explains my iron deficient anemia but now he's making me have a colonoscopy next month. If nothing odd shows up there, then he's doing the stomach biopsy to check for celiac disease. When I asked him if I should start a wheat free diet (he said Celiacs can't eat wheat) he said no. You need to be eating it to get accurate test results. So now I'm just waiting probably a month to find out if I have celiac disease or not. Either way, I'll try and go gluten-free for three months and see if I'm just gluten intolerant which I understand wont' show up in a biopsy. So my comment to you would be that does not make sense (to me) to have the test your doc wants if you're already off gluten.

    Now finally to my question. Does any one know what else could be wrong besides Celiac problems if you are not absorbing nutrients correctly? I asked a Nutirsionist last night at a gluten-free senimar and she couldn't even tell me.....

    Tiffany M


  11. Thanks everyone for the lists! This is so overwhelming but I know I"ll get through it with great support I see on this site.

    I see there is already another Tiffany so I'll now sign as Tiffany M.

    p.s. L'Oreal got back to me today. In case anyone else cares (read: isn't willing to walk around with whitish gray hair at 42) here is what they said. Quoting them here 'L'Oreal Paris Superior Preference and Excellence Creme have not been manufactured using glueten containing ingredients. However, we must say that we cannot guarantee that materials in our products have not been, at some point in the manufacturing processing, come in contact with a gluten-contining ingredient'.


  12. Carolyn,

    I'm using Clobetasol too and I love it! But I'm not off gluten yet, waiting on more tests.... In any case, I read the insert for the Embeline brand I have and it says not to use it for more than two weeks at a time. Well that isn't very helpful for me since if I stop using it my scalp dermatitis comes right back. I called the pharmacy and they said it's fine to keep using it continuously but I don't want to make myself sick. It is a steriod after all. What has been your experience/time of use with it?

    Tiffany


  13. Now I'm totally panicked! At first when reading all this info about getting gluten-free toothpaste and make-up I was bummed but I'm 42 and my natural hair color is now ungy white-ish gray which is why I've been dying it forever. I know a henna rinse won't do anything for me and I can't go without coloring my hair unless I wast to start wearing a wig and I'm not joking? Can anyone help???!!! I need a true hair color product - not a rinse.

    Tiffany