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Thank God I Now Know


adiftime

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adiftime Rookie

Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5


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sickchick Community Regular

Nice to meet you, Billie. You are in the right place. :)

SallyC Newbie
Nice to meet you, Billie. You are in the right place. :)

Yes Billie you are in the right place and you will learn here that doctors don't know everything.

Canadian Karen Community Regular

Hi Billie....

I am glad you found us! There's a bunch of really great, supportive people on here who are extremely knowledgeable not only about celiac, but related disorders also. Lots of us have numerous autoimmune disorders (they tend to come in clusters....).

Our motto here is there is no such thing as a silly question. Anything you want to ask, just fire away!

Welcome to the family!

Karen

tiredofdoctors Enthusiast

Welcome! I think you will find that this forum has some of the best, most kind, caring and knowledgeable people you will find. When I was in the process of being diagnosed, I honestly don't know what I would have done without them. I met my best friends through this forum.

Please know that you are NOT alone . . . and that you are in glad company. Just watch out during the full moon . . . . . . . . . . :lol::ph34r:

Lynne

Canadian Karen Community Regular
. Just watch out during the full moon . . . . . . . . . . :lol::ph34r:

Lynne

Hey! I resemble that remark!!!!! LMAO!

:lol::P

adiftime Rookie

Thank You all for your warm welcome. Like I said I AM SO GLAD I FOUND THIS SITE!!

One day at at time, One new item tried at a time, and One new person a day told about this disease!

That's my new motto.

Good Luck to You All and God Bless Each One of you for a Healthier tomorrow.

Billie


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Piccolo Apprentice

Billie,

Welcome to the board. You and I have a lot in common. I am just a few years older then you, but our weight is about the same. I weigh about 77 as I write this. I have been this weight for years. I can't gain either. At least I can claim to be the smallest in my whole family. The only problem I have being small is I have osteoprosis and I working on fixing that.

Susan :D

adiftime Rookie
Billie,

Welcome to the board. You and I have a lot in common. I am just a few years older then you, but our weight is about the same. I weigh about 77 as I write this. I have been this weight for years. I can't gain either. At least I can claim to be the smallest in my whole family. The only problem I have being small is I have osteoprosis and I working on fixing that.

Susan :D

Hi Susan,

How low was your weight when you were first diagnosed? Did you lose more after going on the gluten free diet? Do you have trouble being able to eat enough calories in a day? My dietician wants me to eat 1800-2200 calories a day, right now I'm averaging 1500-1600. Just not hungry. But I am also some what of a picky eater.

Piccolo Apprentice

Billie

I have not been diagnosed. In April 2006 I had my blood drawn for 96 food sensitivities. I was positive for 21 different foods including wheat and gluten. I went gluten free after receiving these results. Since I have had a few reactions from sometimes unknown ingredients I am afraid to try any foods that I am sensitive to because I don't like being dizzy.

You ask about my weight it has remained steady for years. I got pregnant when I was 73 lb. My top weight 9 months pregnant was 92 lb. (18 years ago now). I did see a nutritionist to find a healthy way to gain weight and now that I am gluten free I am up to about 77. It has taken me two years just to gain the four pounds. I cheer at any weight I gain. My clothes are finally getting a little snug. :D I eat about 1700 calories a day. I keep track of the foods and calories on mypyramidtracker.gov

Susan

adiftime Rookie
Billie

I have not been diagnosed. In April 2006 I had my blood drawn for 96 food sensitivities. I was positive for 21 different foods including wheat and gluten. I went gluten free after receiving these results. Since I have had a few reactions from sometimes unknown ingredients I am afraid to try any foods that I am sensitive to because I don't like being dizzy.

You ask about my weight it has remained steady for years. I got pregnant when I was 73 lb. My top weight 9 months pregnant was 92 lb. (18 years ago now). I did see a nutritionist to find a healthy way to gain weight and now that I am gluten free I am up to about 77. It has taken me two years just to gain the four pounds. I cheer at any weight I gain. My clothes are finally getting a little snug. :D I eat about 1700 calories a day. I keep track of the foods and calories on mypyramidtracker.gov

Susan

Susan,

Guess I hadn't thought about being tested for other food allergies, being able to be done through blood test. That would sure be a lot better than finding out by eating the wrong things and ending up sick.

I weighed 115# when I checked into the hospital to have our daughter, left hospital weighing 98 and have never gained above since. (33 yrs ago)

I've been keeping track of my foods and weight on calorie-count.com. It looks like it does a lot of the same thing your website does, such as keeping track of activities etc..

Billie

Arpita Apprentice
Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5
MrsG Newbie
Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5
MrsG Newbie

Hello,

I too am new here- just found out on 9-11, My story goes way back that it all starts to make some sort of understanding to it... meaning that I had so many things wrong with me that I simply didn't want to complain to anyone anymore and I really just thought I wanted to end it all. I can truly understand what you are dealing with and that if you ever need to just vent please do so - I hardly ever sleep and I am always (shall we say Upshucking) so I thank you for your story and I will share mine with you as well.

EMAIL ME AT MRSGRAZIANO@AOL.COM I would love to talk to someone that understands the emotions that go with this. I am here for you-24/7 I Understand You. much love and I hope you are feeling ok now that you know YOU ARE NOT GOING CRAZY!!

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      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
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