Almost There

[Joe Hoffman]

First, thanks for your help with the salad dressing and teriyaki responses. From your valued imput I take it that I was just lucky with the teriyaki and it is now on the "No Way" list.

This all started for me in early August. Several hospital stays/visits and six doctors later I now know for sure I have Celiac. Especially after I stopped the diet after a biopsy when a Dr. told me I was negative for Celiac, and I started grazing on pizza, breads, cookies, pasta etc,,,,, and my body went into shock,,,,, I'm talking 25 to 35 trips to the toilet daily for over a week and the time not on the toilet was spent curled up in a ball (fetal) on my bed. Each time it was like a gallon of pure water coming out in less than a second. So violent that regardless of which toilet I used everyone in the house could hear me. It was disgusting. The only positive was my three grown children finally all moved out and got their own places. Not only was the Celiac kicking my butt,,,,, but I felt like I was stuck in that movie "Failure to Launch".

Thanks to you guys I was able to understand why the biopsy was negative and why I could still have Celiac. When the blood work came back positive for Celiac I then knew there was no doubt.

Just when I really felt like I was back to where I was when I went off the diet thinking I was Celiac negative, three weeks ago I ate Hillshire smoked sausage and three hours later I was back to square one. I had uncontrollable diarrhea and constant stomach pain/cramping again. 20 - 25 trips daily to the toilet and a gallon of pure fluid in less than a second. This lasted two weeks and then I went into four and a half days of constipation. Once the dam broke I have been feeling much better.

Yesterday was the absolute first day I felt like I was myself again. My arms and legs are thinner than they have ever been with constant spasms and tingling, and my stomach is bloated beyond belief,,,,,, but my spirit is back and I am ready to join the human race again. Also,,,,, I only went to the toilet five times yesterday and it was oatmeal like, not pure water/fluid.

I celebrated by taking my 21 year old son over to the tennis courts and beating him 10-9 in a stickball home run derby game. He beat me two sets to one in tennis, but just barely. Not bad for an old man that has been through where I have been for the past six months. By the way my son was an All-Central Florida football player, he was no easy opponent. He made me pull from within. I remember my first day in an NFL camp when my arms and legs ached so bad,,,,, that was nothing compared to how these little skinny arms and legs feel now. But, the important thing is I made it through the day.

Well I'm almost "there" thanks to my new doctor,,,,, but mostly thanks to you guys. Especially Ken, Deb and Momma Goose.

Ken, you were "right on" with everything. Being the same age/sex and you going through this right before me,,,,, made it almost believable that there would once again be a day when I could leave the house without the threat of going in my pants in public. Yesterday was that day. I'm back.

Deb, thank you so very much for the personal emails and words of encouragement.

Momma Goose, thank you for taking the time also. Your info you passed on was so valuable in my effort to beat this thing.

All three of you guys inspired me and I thank you and all the other posters for taking the time out of your busy schedules to help me and the other new Celiac's.

What I have learned is Celiac is so very different in individuals. I'm 56 and my symtoms were very similar to Ken's who is also 56. My diarrhea was a little more severe, his nausea was a little more severe, but our pain/cramping and bloating was about the same. His arms and legs got a little worse than mine, which tells me he must be one strong determined SOB to pull through it and be walking up mountains. That speaks volumes about his strength and character to me.

If someone were to suggest walking up a mountain to me today, I could only say "are you nuts?". "How about a little stickball or tennis?".

When I was a head college football coach I was quoted in the newspaper as saying "sometimes it's better to be lucky than good". Yesterday with the "Teriyaki" episode I learned that with Celiac "it's better to be smart than lucky". That was absolutey stupid on my part to risk all that I have gained on something that may, or may not, have put me back to square one. To make matters worse, my wife made me sleep in the back bedroom by myself. At least my little Sharpai cuddled up with me.

Thanks again to you all, and God Bless,

Joe Hoffman

[darlindeb25]

Joe, It's great you are doing so well! To be honest, we all learn the hard way, it's how we have to learn. It's honestly the best way to learn, baby steps. Mistakes help us learn lessons and we remember them much better. Any time you have a question, feel free to email me, my aol is always there!!!!

I was glutened by a medication a few weeks ago and I was so angry. We try so hard. I researched and researched, it's website wouldn't open, the 800# wouldn't give me info until morning, anything I did find online did not give me a definite answer and still, against my better judgment, I gave in to my pain and I took the med. 36 hours later, a major neurological glutening reaction hit me and I was so sorry I did not go with my first instinct. When my head finally cleared enough to finally call the company, the girl that answered gave me that answer that many of us have heard, "The product states the ingredients clearly on the label and gluten is not stated, so therefore it does not contain gluten!" In my foggy state, I thanked her and beat myself up for the rest of the day, until my head finally cleared and I realized what she actually said. Of course gluten was not listed in the ingredients, I knew that--duh Deb!!! A week later, The website finally opened and it did say the product is gluten free, BUT, I know it glutened me, without a doubt, so I emailed them with that info and one week later, I am still waiting for a response from them--NOTHING! I will never trust them again and I will never recommend the product to anyone. There was nothing else I had that could have glutened me, only that product and, my first instinct was to not touch it.

Go with that first instinct Joe. When you pick up a product and you are reading the ingredients, if you are reading and you get this feeling that says, "Put it back Joe!", then, put it back! Listen to yourself, you will safe yourself a lot of pain!

Good luck Joe--keep in touch!!! Deb

[kenlove]

Thanks for the kind words Joe, It's great you've gotten to the point where it was a normal day -- it can only get better from here.

Sure there will be an occasional setback ( Like when I found they add wheat to buttermilk -- after I drank some) but its nothing you cant deal with.

Funny, I could still out shoot my 30yr old son at basketball but he ran rings around me. Good thing I didnt have your problem as I wont even run for the bathroom anymore. Will just stick to slow climbing around the mountains here looking for rare banana plants and wild fruit trees.

Now if we can only get rid of this bloating! My waste is down to 34 but I need a 3X shirt to button it around my belly!

Good luck

ken

First, thanks for your help with the salad dressing and teriyaki responses. From your valued imput I take it that I was just lucky with the teriyaki and it is now on the "No Way" list.

This all started for me in early August. Several hospital stays/visits and six doctors later I now know for sure I have Celiac. Especially after I stopped the diet after a biopsy when a Dr. told me I was negative for Celiac, and I started grazing on pizza, breads, cookies, pasta etc,,,,, and my body went into shock,,,,, I'm talking 25 to 35 trips to the toilet daily for over a week and the time not on the toilet was spent curled up in a ball (fetal) on my bed. Each time it was like a gallon of pure water coming out in less than a second. So violent that regardless of which toilet I used everyone in the house could hear me. It was disgusting. The only positive was my three grown children finally all moved out and got their own places. Not only was the Celiac kicking my butt,,,,, but I felt like I was stuck in that movie "Failure to Launch".

Thanks to you guys I was able to understand why the biopsy was negative and why I could still have Celiac. When the blood work came back positive for Celiac I then knew there was no doubt.

Just when I really felt like I was back to where I was when I went off the diet thinking I was Celiac negative, three weeks ago I ate Hillshire smoked sausage and three hours later I was back to square one. I had uncontrollable diarrhea and constant stomach pain/cramping again. 20 - 25 trips daily to the toilet and a gallon of pure fluid in less than a second. This lasted two weeks and then I went into four and a half days of constipation. Once the dam broke I have been feeling much better.

Yesterday was the absolute first day I felt like I was myself again. My arms and legs are thinner than they have ever been with constant spasms and tingling, and my stomach is bloated beyond belief,,,,,, but my spirit is back and I am ready to join the human race again. Also,,,,, I only went to the toilet five times yesterday and it was oatmeal like, not pure water/fluid.

I celebrated by taking my 21 year old son over to the tennis courts and beating him 10-9 in a stickball home run derby game. He beat me two sets to one in tennis, but just barely. Not bad for an old man that has been through where I have been for the past six months. By the way my son was an All-Central Florida football player, he was no easy opponent. He made me pull from within. I remember my first day in an NFL camp when my arms and legs ached so bad,,,,, that was nothing compared to how these little skinny arms and legs feel now. But, the important thing is I made it through the day.

Well I'm almost "there" thanks to my new doctor,,,,, but mostly thanks to you guys. Especially Ken, Deb and Momma Goose.

Ken, you were "right on" with everything. Being the same age/sex and you going through this right before me,,,,, made it almost believable that there would once again be a day when I could leave the house without the threat of going in my pants in public. Yesterday was that day. I'm back.

Deb, thank you so very much for the personal emails and words of encouragement.

Momma Goose, thank you for taking the time also. Your info you passed on was so valuable in my effort to beat this thing.

All three of you guys inspired me and I thank you and all the other posters for taking the time out of your busy schedules to help me and the other new Celiac's.

What I have learned is Celiac is so very different in individuals. I'm 56 and my symtoms were very similar to Ken's who is also 56. My diarrhea was a little more severe, his nausea was a little more severe, but our pain/cramping and bloating was about the same. His arms and legs got a little worse than mine, which tells me he must be one strong determined SOB to pull through it and be walking up mountains. That speaks volumes about his strength and character to me.

If someone were to suggest walking up a mountain to me today, I could only say "are you nuts?". "How about a little stickball or tennis?".

When I was a head college football coach I was quoted in the newspaper as saying "sometimes it's better to be lucky than good". Yesterday with the "Teriyaki" episode I learned that with Celiac "it's better to be smart than lucky". That was absolutey stupid on my part to risk all that I have gained on something that may, or may not, have put me back to square one. To make matters worse, my wife made me sleep in the back bedroom by myself. At least my little Sharpai cuddled up with me.

Thanks again to you all, and God Bless,

Joe Hoffman

[Joe Hoffman]

Alright guys, two days after posting this thred "Almost There" I came down with a high fever and it appears to be a nasty upper resp. infection. I started taking lots of fluids and started on antibiotics. For the first four days I thought for sure I was going to die. Every breath was a struggle and I am talking absolutely zero strength and energy. I've had these infections before and kicked butt. Down two days then a recovery day and then back on my feet at full go.

I have never been this sick before.

I have two questions:

First, Is this something I need to get used to,,,,, that Celiac makes every other thing magnified?

Second, tonight I put Vicks Vapo Rub on my chest and I have been itching really bad all night. I thought it was gluten free but the Turpentine Oil scares me a little. Is Vicks Gluten Free?

As always thanks for your help,

Joe

[kenlove]

Well again we're on the same wavelength. I just started my third week of laryngitis and flu. Flu is gone but today my voice level is 0. First they tried antibiotics -- skip a week and now on amoxicillin. Doc said to check with the pharmacy to see if its gluten-free and the pharmacy said check with the doc. After a few calls and extensive online research I found it was ok but of course it's not doing much and I still cant talk although energy level is better.

This is the worst I've had it too except for the hong kong flu in the 70s when I had 104 temp for 3 days. I've been using vicks with no problem though. As to celiac magnifying everything its hard for me to say but I tend to think its the case at least for a few years until the vili recover.

Don't know if thats really true, just my guess although this is the first time i've been sick since diagnoses.

good luck and get well!

ken

Alright guys, two days after posting this thred "Almost There" I came down with a high fever and it appears to be a nasty upper resp. infection. I started taking lots of fluids and started on antibiotics. For the first four days I thought for sure I was going to die. Every breath was a struggle and I am talking absolutely zero strength and energy. I've had these infections before and kicked butt. Down two days then a recovery day and then back on my feet at full go.

I have never been this sick before.

I have two questions:

First, Is this something I need to get used to,,,,, that Celiac makes every other thing magnified?

Second, tonight I put Vicks Vapo Rub on my chest and I have been itching really bad all night. I thought it was gluten free but the Turpentine Oil scares me a little. Is Vicks Gluten Free?

As always thanks for your help,

Joe

[kenlove]

Got to thinking last night after I wrote the previous message. Its not so much that things are magnified as that it just takes longer for everything to heal and may just seem magnified. Soars or scratches take forever to clear up, colds take weeks instead of days and so on.

Maybe, just a guess, our bodies are fighting off or starting to heal and the energy it takes to fight off new problems is not at the same level.

Sure am sick of being sick!

Ken

Alright guys, two days after posting this thred "Almost There" I came down with a high fever and it appears to be a nasty upper resp. infection. I started taking lots of fluids and started on antibiotics. For the first four days I thought for sure I was going to die. Every breath was a struggle and I am talking absolutely zero strength and energy. I've had these infections before and kicked butt. Down two days then a recovery day and then back on my feet at full go.

I have never been this sick before.

I have two questions:

First, Is this something I need to get used to,,,,, that Celiac makes every other thing magnified?

Second, tonight I put Vicks Vapo Rub on my chest and I have been itching really bad all night. I thought it was gluten free but the Turpentine Oil scares me a little. Is Vicks Gluten Free?

As always thanks for your help,

Joe