• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
3 3
  • entries
  • comments
  • views

About this blog

My story

Entries in this blog

Carri Ninja
Yesterday my husband and I went to VG's Food center and found a gluten free food list at the service counter. I thought this was very interesting. I am always looking for new things that are gluten-free, and different places that are easier to shop. When I picked up the list I was surprised to find that it was 2 pages long. It was organized by category, product, brand, and put into two very easy to read columns.

[url=" http://www.vgsfood.com/tygl/pages/TYGL_GlutenFree_s.las?-token.S=62DT9R1F6430a08P7fa1419EPPVN6L51EDDB0F|24667|1004120824|||"][u][b]Click here[/b][/u][/url] to go to their website. It also has a neat feature where u can build your own shopping list. I haven't used this much, but thought it was kinda cool.
I am sure most of you celiac's have resorted to lots of home cooking, like I have. We do go out to eat about twice a week, but it can be a toss up some days. I haven't been cross-contaminated in over 6 moths from a restaurant, but the fear still crosses my mind when someone suggests someplace new to eat.
Carri Ninja
[font="Arial Black"]So I heard that propel had some new flavors and have added extra vitamins to help hydrate! Just what every celiac needs - extra hydration - turns out to be not so great for me![/font] I though it could be good. Propel has always been gluten free, and helped with my dehydration issues immensely! I usually get the little flavor packets to carry in my purse just in case.

Well I saw the new flavors and I grabbed the new peach one. It tasted a bit funny, so my son drank the rest of it. (I have learned if I don't like the taste don't eat/drink it because it usually means an allergy.) So we were at the store the next day and I grabbed a box of the propel packets. Cherry lime flavored this time. I read the ingredients on the box all seemed to be ok. I mix one packet with 20 oz of water and drink one a day, so it isn't real strong - thankfully.

The runny nose and overnight ear/nose/throat infection, severe cramps, feeling like I got hit by a truck, and you know the rest of the usual fun stuff, was my first clue that something was wrong. I got my antibiotic later that afternoon. (continued to drink the propel - still didn't know) Late that evening I was feeling super thirsty and so I made up a bottle. I drank the whole bottle with dinner. BAD! I spiked a fever of 103. My cheeks flushed bright red and the rest of me was ghostly white. My husband asked if I was OK and I said I was having a reaction to something.

He got me the usual arsenal of pills along with my antibiotic. The next morning I woke with my body covered in DH. Eczema spots the size of quarters on both elbows. I was really starting to worry. I had eaten different things that only I had prepared, so that amount of contamination was out of the question. I seemed to get a little better, until dinner time. I had prepared dinner and made a bottle of water.
About half way through the bottle I realized - oh duh I know right.

Anyways I did some reading. All of the ingredients were the same from the previous kind to the new kind EXCEPT for GUM ACADIA / GUM ARABIC !!!!! (same just dif name)
I have a severe allergy/intolerance to it come to find out.
So I decided to look and see if the not so wonderful peach flavor had it as well.
Nope, but even better it has MALTODEXTRIN!!

So I suggest to any of you who are propel fans - try with extreme caution. I thought I was being careful, but you just never know!

I am still covered in DH and have been for almost a week now. My skin is peeling like I have had a sun burn. I have been showering in baby oil to help. If anyone has any suggestions for home remedies I would love to hear it!! My husband and I are tired of feeling my sandpaper skin. My husband is very supportive, but it hurts him when I pull away. I cannot stand to be touched right now, it is hard to explain that to my 7 yr old. I hug him and hold him anyways, but it is making the peeling worse.

Thanks for reading.
Suggestions greatly appreciated!!
Carri Ninja

Still Sick

As of recently I had a scope done.
I have been gluten free for a year now and had to have a scope done because I am still bleeding. The Dr. thought that I might have colon cancer. Very scary at 29.
I watched my grandmother go through a lot of the same things. She passed away in her mid 50's. When the scope results came back there was no cancer. THANK GOD. If you have read any of my other posts you might have seen this already.
I was just back at the Dr.'s office yesterday because of ongoing problems.

My scope showed that I still have Celiac damage and that can still be causing the bleeding.
He also told me yesterday that he really couldn't find why I am still having pain, vomiting, weight loss, extremely tired, memory lapses, and a long list of other strange problems. So instead of just telling me I was crazy and imagining things he started looking over other tests I have had done.

Come to find out I have [u][b]Post Tubal ligation syndrome.[/b][/u]
I had never heard of this and was never told the risk of this happening when I had my tubes tied. From what he said there is a 33% chance of getting it in the first 5 years after having your tubes tied. 33% is a huge number considering how many women have their tubes tied each year! The blood flow is cut off to the uterus and ovaries causing a hormone imbalance. WOW right! As if my poor family hasn't suffered enough!

I now have to have a hysterectomy here very soon.

So if your thinking about getting your tubes tied, please talk to your DR. about the risks of Post Tubal ligation Syndrome. It is very very real and can cause a numerous amount of problems.

33% is not a huge percentage, but I am one of that 33%, and the Dr. didn't explain the risk. It is so frustrating and maddening that I have suffered so long with the cealiac and to now have to go through even more because of an elective surgery.
Carri Ninja

My Son

My son is 7 now.

He occasionally {about 3 - 5 times a year} has random pain, fever and unexplained clumsiness.

I see this and think of all the times I went through that as a child.

I have had the Dr give him the blood test for Celiac and it came back negative. I know that blood test isn't always accurate.

I am on a very strict gluten free diet. He eats gluten free - by choice - for the most part.

It still worries me because of all the genetic problems that run in my family.

I have talked to a lot of people about this and quite a few of them said that the problems would "flare up" now and then in kids, but then when they got older they noticed things getting severely worse.

I am keeping a close eye on him.

If anyone has an opinion they would like to share on this I would love to hear it!!
Carri Ninja

My Story

[center]"I'm sick but I'm pretty."
[b]I was always told not to complain because I had it good compared to my autistic cousin and aunt with Cerebral palsy. Agreeing with this I suffered year after year silently as I could imprisoned in my own body knowing something was wrong.[/b]

So here it is about the real - sick - me. If you take the time to read this I thank you. There are several stories on this board that have been truly inspiring.
I hope I can do the same for at least one more person!

I have been sickly my entire life. I had problems with weight gain when I was an infant. I was either way to skinny or way to fat.

At age 6 it was found that I was deathly allergic to rye and many other things, but was never tested for other grains. :wacko:
Tested repeatedly for HIV {yes at age 6} and other immune deficient conditions - all were negative. {thank god} My parents were told I was just an "indoor person" because of my allergies and immune deficiencies. Allergy shots made the problems worse - after each shot I would have a softball sized lump in my arm. At 6- 12 yrs old that is humongous! I was on allergy pills that made me sleep half the day, and still wasn't any better.

At age 15 I had a Hiatal hernia, and an emergency appendectomy. I had to eat a very restricted diet and swallow some more pills.
Found out I am Allergic to Caines - the local anesthetics - when I had a seizure at the dentist office - at age 15 as well. It was a very unpleasant year lol.{family members were very concerned I was anorexic/bulimic because of the constant vomiting. I didn't like to throw up so I just ate less and less.}

At age 18 I started an even stricter vegetarian and low carb diet and had a fairly healthy year - It was amazing I thought I finally was going to be healthy and had out grown my problems like all the dr's said I would!
[i][b]I even grew 2 inches!![/b][/i]

At age 19 I ended up with a severe protien deficiency and "had to eat other grains and meat again".
I started to get sick once more. The following year I had measles, strep 4 times, an eye infection that caused me to be to be legally blind, 12 bouts of an "unknown viral infection that will not leave your system - gotta tough it out kiddo", the flu, bronchitis for about 6 months, and 15 to 20 sinus infections.

Diagnosed with IC, IBS, extremely bad endometreosis {My uterus is folded in half and full of scar tissue, and ovulation comes only about once a year. At 15 I was told I should have a hysterectomy, but refused. I was Told I would never have children.}
At age 21 I was "lucky" enough to have a hard fall - broke my tailbone - and it shifted and opened things just enough to let me get pregnant. I was told there was a 75% chance he would be retarded. My miracle son is now 7, perfectly healthy, happy, and full of life. Little did I know at the time the reason I was so sick was due to the prenatal vitamins being pack full of gluten to "help me gain pregnancy weight". I'm 5'6" weight was 135 lbs - when I gave birth I was 108lbs. My son was 7lbs 7 oz and 19 1/2 in long. They were shocked that he had a normal birth weight because of all my weight loss.

Age 21 {2001}Heart arrhythmia and prolapsing mitral valve came with pregnancy.
I continued to suffer with the steroids, digestive, and heart problems for the next eight years getting sicker the whole time.

My brother moved in with us to help take care of the baby and me because I wasn't conscious half the time. I would eat and then pass out on the couch for the rest of the day. This caused severe depression and mood swings. I do have to say those guys put up with so much! I really do feel that they must love me so so much!

The beginning of 2008 I had another "virus" that caused my intestines and other organs to swell. I couldn't keep any food what so ever down. I started to have some clue then that it was food causing the reactions. I was tested for thyroid and diabetes again. I remember being at my husbands aunts house feeling ungodly ill. I went to the bathroom and it was solid blood. I went out and laid in the chair and dozed off. I remembered thinking, as I closed my eyes, I don't think I will be waking up from this one. About 3-4 hours had passed and my husband was shaking me quite violently to wake me and everyone was staring. I was unable to function on my own. My husband, the wonderful man that he is, took care of me the best he could. He tried to talk me into going to the ER, but I refused.

I was diagnosed Nov of 2008 with celiac -
by a friends mom - DR's tests never found the problem until after it was brought to their attention.

After I was diagnosed I convinced my mom to go gluten free and she found out she has celiac as well.

August 2009 I had a scope done to check for cancer, and it was all clear YAY.

Several of my family members have died at young ages of intestinal related issues and cancers. Genetics have not been kind in my family, but I think most of it stems from the undiagnosed/untreated celiac.

With the change in diet I am finally starting to see a difference in my life. The brain fog, pain, fatigue, and muscle weakness has almost completely subsided.

So again if you took the time to read this, thank you.
I hope I have inspired you to never give up even though it sometimes feels like the the options have ran out.

Good luck to you and may god bless you with at least one beautiful miracle like I have had.
3 3