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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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    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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