Is This Finally The Right Diagnosis?

[msafford]

First of all, I would just like to say a BIG THANK YOU to all of you who have shared your stories.  It has been very helpful to me, as I think I have just been diagnosed.  I have read enough over the past week that I have to believe this is finally an answer to my health problems.

 

I was, like some of you actually somewhat happy to have an answer for my lifelong ills.  Sickness and misdiagnosis since I was 14 (I am 43 now).  I will try and be brief, but apologize in advance if I get wordy.  

 

So, I will ask my questions first and so if you don't want to read another newbies sob story, is OK! 

1) I was gluten free for 3 days and I felt on top of the world, is it really possible to feel better that quick?

 

2) On day 4 I got very sick.  Thinking I was gluten free.  my man made me tell him my menu, he pointed straight to the imitation Bacon Bits.  Is it possible to not only feel better that fast but have such a severe reaction to a few bacon bits?  I did confirm they use wheat in them...

 

3) People who have known me for a long time are tired of my "misdiagnosis" and so they all find this very hard to believe, I am struggling myself to believe it.  I'm scared for the first time really.  What if nobody believes me?  Am I the girl who has cried wolf too many times?

 

4) I was working at Pizza Hut and was going to go back when I felt better, now I am scared the whole place is a gluten zone!  Should I be scared?

 

I am sure I will have more.

 

Now you can read my story if you want...  But if you have answers to my questions, I would love to hear them! 

 

I actually started my unending visits to the doctor and the hospital when I was 4 years old. I started having heart palpitations and they got worse and worse over a couple of days...  Mom took me to the emergency room when she could see my heart beating out of my chest.  My mom swears (and says she still has the report from the hospital) that when they hooked me up to the monitor it literally went off the page (it was 1974, YES, they still did it on a machine with paper only!) and when they finally got a number they wrote down it was somewhere "around" 280 BPM.  They doped me, brought it down, told her she was lucky I didn't "stroke out" and that I had to go to Children's Mercy Hospital in the morning.  I went to that hospital everyday for 6 months, then every week, then every month, etc... until I was 12.  No diagnosis, just severe oddly timed palpitations that they couldn't explain and so they basically sent me away. 

 

Severe asthma at 14, and then at age 15, diagnosed with systemic lupus (coming to that diagnosis was over a year of misdiagnosis; strep with a rash, mono, etc. all the things that make you sick, lethargic, weak, tired, itchy; you get the point.  I will spare you from the other details!)  Now, that was a death sentence in 1985, and so we all thought I was going to die.  But I didn't, and my ANA and Titer counts went closer to normal and they pronounced I was in remission.  And I was a teenager so I quit going to doctors.  P.S.  They said Lupus explained the palpitations?!?!?

 

Miscarried at 19, had a "Lupus Flare", they wanted me to get a hysterectomy, I refused and 2 years later had a beautiful boy who just turned 21 yesterday!  I started to second guess doctors and so I pretty much quit going again.

 

I did continue having "flares", but now it started to involve physical sickness...and weird things.

Had a lymph node removed, doc said it was Cat Scratch Fever but he had to "dig" it out because it had fingered so bad. 

Severe, different than lupus rashes.

Gallbladder failure (they removed it)

and the worst misdiagnosis ever... Chron's Disease. 

I was 114 lbs (5'7" woman) when they wrongly diagnosed (I was usually 135-140 lbs and it had been dropping rapidly), so they put me on 8 different Rx's up to 30 pills a day.  I continued to get worse and was 98 lbs facing an infusion treatment when I said STOP!  I went off everything and although I still was pretty sick, I am pretty sure the pills were poisoning me.  So, I bet you can guess, I really did quit going to doctors.  That was 7 years ago.

 

Fast forward.  My love of my life, Scott, was injured 2 years ago.  We have been together for 7 years and he has nurtured me from much sickness.  He helped me with bills when I couldn't work (for a full 18 months at one point... I was basically bedridden), he always tried to love me back to health.  Basically I could feel better if I just didn't eat, so I didn't for as long as I could.  It was like being on a fricken roller coaster; of course I was not even thinking gluten so I would eat a couple saltines, piece of bread, etc...would get sick, not eat again, rinse and repeat!!! 

 

But 2 years ago I had to go back to work.  The last 2 years have been a living hell.  I just quit complaining about being sick.  He would notice, we would fight about the doctor, I would deflect and win.  I am also extremely poor with no insurance, so it was pretty easy to win.

 

Finally, I could stand the pain no more and the itchy rash was driving me crazy(er) lol.  So I went to KU Med free night clinic.  They happened to have a rheumatologist that night and he urged me to a low cost clinic to at least get my well woman exams. 

 

The doctor there was great and she and I talked for a very long time.  We talked about Celiac Disease.  I asked about the blood tests and she said in her opinion, I needed to stop all gluten immediately and that it would give us the answer right away.  I think it did.  But I hate that I do not have a confirmation.  In reading posts, I understand that you have to be on gluten for an accurate test and I guess my doc didn't want to chance it....

 

Thanks so much again and I do apologize for how long this post is.

Michelle

 

 

 

 

 

 

 

 

 

 

[w8in4dave]

1. it is possible to feel better that quick! 

2.Yes some people will have a reaction for weeks after just a tiny bit of Gluten.

3. we believe you! And over time you will settle into a routine. And they will see how much better your doing on your new diet and believe you. If not too bad for them. 

4. I'd be scared at Pizza Hut

 

Now i'm going to go read your story, but 1st just know, it is over whelming at 1st. You think you have everything under control then you find something that has gluten in it that you never thought of. Go to the newbie page. But just learn as much as you can and listen to the people here that have had this problem for years. It is life changing! But you will feel so much better! Good luck! Ok i'm gunna go read you story  

[w8in4dave]

Wow what a struggle! I think so many here struggled for so long! Hopefully you have figured it out! If not eating Gluten makes you feel better than I'd say your Celiac. Good luck to you!

[NoGlutenCooties]

Hi Msafford and Welcome!

 

Many people report feeling better right away as soon as they go gluten-free and yes, even a tiny bit of gluten can cause a severe reaction once you have it out of your system.  I am a bit surprised that it would give you a reaction after being gluten free for just 3 days, but everyone is different.  Some people start to feel worse before they start to feel better and others seem to have symptoms that come and go for awhile before they go for good.  Just be prepared for that in case this happens to you.

 

I would be paranoid working at Pizza Hut but there are a few others on here who have mentioned that they work there.  If you're not around the flour while the dough is being made, you can be safe.  But if they make their own fresh dough the flour can stay in the air for hours - you breathe it in and swallow a bit of it, which can make you sick.  You also need to make sure to wash your hands before you eat your own food, don't store your food where it can get cross-contaminated, etc. 

[msafford]

1. it is possible to feel better that quick! 

2.Yes some people will have a reaction for weeks after just a tiny bit of Gluten.

3. we believe you! And over time you will settle into a routine. And they will see how much better your doing on your new diet and believe you. If not too bad for them. 

4. I'd be scared at Pizza Hut

 

Now i'm going to go read your story, but 1st just know, it is over whelming at 1st. You think you have everything under control then you find something that has gluten in it that you never thought of. Go to the newbie page. But just learn as much as you can and listen to the people here that have had this problem for years. It is life changing! But you will feel so much better! Good luck! Ok i'm gunna go read you story

Thank you for your response and words of encouragement!

 

I just feel so paranoid right now. 

I live with Scott, and my son and his friend live here too.

I am starting to think that my son may be Gluten intolerant at best, but could be Celiac.  He had a horrible time in school and he is realy depressed (I always chalked it up to being a teen and being worried about me all these years, BEST SON IN THE WORLD!), really thin, etc... 

But none of them are gluten-free and we have a really small kitchen area.  So for example, I bought a 10 lb roll of hamburger.  They wanted to help split it up into 1 lb ziplocks, but I was afraid they wouldn't be carefull ( I scared them away).  That is what prompted me to write.  They believe me, but they think I am going "overboard" and that there is no way cc can be that bad!

We'll get there, just really hard right now!

[msafford]

Hi Msafford and Welcome!

 

Many people report feeling better right away as soon as they go gluten-free and yes, even a tiny bit of gluten can cause a severe reaction once you have it out of your system.  I am a bit surprised that it would give you a reaction after being gluten free for just 3 days, but everyone is different.  Some people start to feel worse before they start to feel better and others seem to have symptoms that come and go for awhile before they go for good.  Just be prepared for that in case this happens to you.

 

I would be paranoid working at Pizza Hut but there are a few others on here who have mentioned that they work there.  If you're not around the flour while the dough is being made, you can be safe.  But if they make their own fresh dough the flour can stay in the air for hours - you breathe it in and swallow a bit of it, which can make you sick.  You also need to make sure to wash your hands before you eat your own food, don't store your food where it can get cross-contaminated, etc. 

Thank you for your reply and encouragement.  I am going to find a different job...the rash really got worse when I started working there, I took way more benedryl than anyone should take just to make it through a shift!

[IrishHeart]

The "newbie page" w8tin mentioned is here. I'll give you the link because you may not find it otherwise. 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

An accurate diagnosis would be nice to have and it is too bad the doctor didn't just run the test instead of telling you to stop eating gluten.

And yes, you could have all of those symptoms with non-celiac gluten intolerance.

I do not know many people with celiac who felt that much better in  only 3 days, but I guess it is possible. It took me a long time, but

I was pretty sick at DX. If you felt better, it sure suggests gluten intolerance of some kind.

 

How do you know it is NOT also Crohn's?  Some people have both of these autoimmune diseases.

 

If you are getting a rash from working around flour, I do not think working there is a good idea, hon. Sorry, just my opinion.

I know I would never be able to work around airborne flour. 

 

Maybe you should print off this? It explains what you need to do to prevent cross contamination.

 

 

• Don’t use wooden spoons or cutting boards that also are used to prepare gluten-containing foods because the spoons and boards can harbor residual gluten and bacteria. Metal or plastic are better options.

• Cover shared grilling surfaces when barbequing because unless the grill reaches 500˚F or higher for 30 minutes or longer, grilling won’t eliminate any residual gluten.

• Buy a separate waffle maker or bread maker if the one the family uses doesn’t have parts that can be disassembled and placed in the dishwasher.

• If using a separate toaster isn’t possible, use toaster-safe toaster bags such as Celinal Toast-It or Vat19 ToastIt, available online.

Pam Cureton, RD, LDN, a dietitian at the Center for Celiac Research at the University of Maryland, adds these tips:

• When planning parties at home, prepare a buffet of foods that are 100% gluten free to prevent accidental cross-contamination among family members and guests.

• Buy squeezable condiment containers for ketchup, mustard, and mayonnaise to prevent double dipping. If you don’t purchase squeezable containers, mark condiment jars as safe depending on whether they’ve been exposed to gluten-containing foods.

• Store gluten-free products on the top shelf of the pantry or refrigerator so other foods don’t accidentally cross-contaminate them.

 

Shelley Case, BSc, RD, president of Case Nutrition Consulting and author of Gluten-Free Diet: A Comprehensive Resource Guide, offers the following ideas:

 

• In supermarkets, don’t buy unpackaged foods stored in bins. The scoops used to place the foods in bags or containers may have been previously used on nearby gluten-containing foods and may not have been sufficiently cleaned.

• Use different colored stickers to distinguish between gluten-containing and gluten-free products in the pantry and fridge.

• Purchase a colander in a different color for gluten-free foods so it doesn’t get mixed up with the colander used for gluten-containing foods.

• Buy gluten-free grains that are certified gluten free to ensure cross-contamination didn’t take place during processing.

• Buy gluten-free flours marked as gluten free from reputable companies that are more likely to test for gluten.

• Avoid purchasing imported foods. Other countries may not abide by the same gluten-free standards as the United States.

[msafford]

The "newbie page" w8tin mentioned is here. I'll give you the link because you may not find it otherwise. 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

An accurate diagnosis would be nice to have and it is too bad the doctor didn't just run the test instead of telling you to stop eating gluten.

And yes, you could have all of those symptoms with non-celiac gluten intolerance.

I do not know many people with celiac who felt that much better in  only 3 days, but I guess it is possible. It took me a long time, but

I was pretty sick at DX. If you felt better, it sure suggests gluten intolerance of some kind.

 

How do you know it is NOT also Crohn's?  Some people have both of these autoimmune diseases.

 

If you are getting a rash from working around flour, I do not think working there is a good idea, hon. Sorry, just my opinion.

I know I would never be able to work around airborne flour. 

 

Maybe you should print off this? It explains what you need to do to prevent cross contamination.

 

 

• Don’t use wooden spoons or cutting boards that also are used to prepare gluten-containing foods because the spoons and boards can harbor residual gluten and bacteria. Metal or plastic are better options.

• Cover shared grilling surfaces when barbequing because unless the grill reaches 500˚F or higher for 30 minutes or longer, grilling won’t eliminate any residual gluten.

• Buy a separate waffle maker or bread maker if the one the family uses doesn’t have parts that can be disassembled and placed in the dishwasher.

• If using a separate toaster isn’t possible, use toaster-safe toaster bags such as Celinal Toast-It or Vat19 ToastIt, available online.

Pam Cureton, RD, LDN, a dietitian at the Center for Celiac Research at the University of Maryland, adds these tips:

• When planning parties at home, prepare a buffet of foods that are 100% gluten free to prevent accidental cross-contamination among family members and guests.

• Buy squeezable condiment containers for ketchup, mustard, and mayonnaise to prevent double dipping. If you don’t purchase squeezable containers, mark condiment jars as safe depending on whether they’ve been exposed to gluten-containing foods.

• Store gluten-free products on the top shelf of the pantry or refrigerator so other foods don’t accidentally cross-contaminate them.

 

Shelley Case, BSc, RD, president of Case Nutrition Consulting and author of Gluten-Free Diet: A Comprehensive Resource Guide, offers the following ideas:

 

• In supermarkets, don’t buy unpackaged foods stored in bins. The scoops used to place the foods in bags or containers may have been previously used on nearby gluten-containing foods and may not have been sufficiently cleaned.

• Use different colored stickers to distinguish between gluten-containing and gluten-free products in the pantry and fridge.

• Purchase a colander in a different color for gluten-free foods so it doesn’t get mixed up with the colander used for gluten-containing foods.

• Buy gluten-free grains that are certified gluten free to ensure cross-contamination didn’t take place during processing.

• Buy gluten-free flours marked as gluten free from reputable companies that are more likely to test for gluten.

• Avoid purchasing imported foods. Other countries may not abide by the same gluten-free standards as the United States.

Thank you so much for the helpful links.

 

So sorry…I should have mentioned (those last weeks before going gluten-free are kind of a blur!) that when I went to the KU night clinic I was really sick.  They almost put me in the hospital because I had trace blood in my urine (not protein or white cells), and was very sick.  They were thinking ulcer because my upper stomach right under my rib cage was on fire/severe nausea.  So he put me on a clear liquid diet until I could get to the regular doc.  So actually I had been gluten-free for about 10 days…and didn’t really eat anything until day 6/7 and by that time I was already ordered gluten-free by my new doctor.  I don’t know if that makes any difference, but anyway….

 

On a really positive note, I was able to get some money and went shopping.  I have started to reorganize my kitchen and I have actually been baking and cooking for the last few days!  When I finally really nail a recipe I will let you know.  I did a lot of homework before I went shopping and settled on my local Natural Grocers (I am lucky to live in a very large suburb of Kansas City).  Boy did I make the right decision!  Not only did they have everything on my list, it was the cheapest in town, and the gentleman that helped me was a 2 year diagnosed Celiac!  He is my new best friend!

 

THIS WEBSITE IS INVALUABLE!!!  I am so eternally grateful to the whole Gluten Free community.  I don’t think I have felt alive like this for 15+ years!

 

Sincerely,

Michelle

[RMJ]

Is the rash on exposed skin or skin that is covered with clothing? (In other words, is it from contact with something, or due to something you ingest (eat or breathe))? Could you wear a mask and long sleeves while working at Pizza Hut until you find a new job?