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I'm Back, And I Have Celiac Disease!


Frances03

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Frances03 Enthusiast

so am I a Gold Star Celiac now?? LOL

I had my colonoscopy and it was FINE FINE FINE

I had my endoscopy and he said he could "see damage consistent with Celiac Disease" just from looking, of course he is sending all my stuff to be biopsied. But, I got so lucky, because he actually KNEW something about Celiac and said his former wife had written a book on the diet! I also have a hiatal hernia, and a lot of damage from heartburn type stuff, acid backing up my esophagus etc. So, I am to go gluten free right away, and get an appt with a dietician, and also he wants to recheck my anitbody levels to make sure I'm doing well on the diet!! I feel FANTASTIC!!! All these years of garbage and I finally have something I can TREAT! I will be HAPPY to eat gluten free the rest of my life!!! Thank you so much for your prayers and kind thoughts today also. I appreciate them all. And thank you for the support on this board. I will be sticking around and trying to educate everyone I know about Celiac Disease. Next, I will be getting my 3 children tested.


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sussarliv Newbie
so am I a Gold Star Celiac now?? LOL

I had my colonoscopy and it was FINE FINE FINE

I had my endoscopy and he said he could "see damage consistent with Celiac Disease" just from looking, of course he is sending all my stuff to be biopsied. But, I got so lucky, because he actually KNEW something about Celiac and said his former wife had written a book on the diet! I also have a hiatal hernia, and a lot of damage from heartburn type stuff, acid backing up my esophagus etc. So, I am to go gluten free right away, and get an appt with a dietician, and also he wants to recheck my anitbody levels to make sure I'm doing well on the diet!! I feel FANTASTIC!!! All these years of garbage and I finally have something I can TREAT! I will be HAPPY to eat gluten free the rest of my life!!! Thank you so much for your prayers and kind thoughts today also. I appreciate them all. And thank you for the support on this board. I will be sticking around and trying to educate everyone I know about Celiac Disease. Next, I will be getting my 3 children tested.

Glad to hear that you finally have answers!

Susan

happygirl Collaborator

Wonderful that you know now. I hope you stick around...this is a great resource!

Ahorsesoul Enthusiast

"I feel FANTASTIC!!!"

That sure does say it all! You are now an official member of the gluten free club! It's so nice to finally figure out what's wrong that we do cartwheels to find out we are celiacs. lol

Roda Rising Star

Sounds like he turned out to be alright. Now he needs to educate his nurse practitioner. Hope you feel better soon. Also after my confirmed diagnosis I asked my kids ped to screen and explained that I just had gotten a diagnosis. He refused to order the blood tests, saying they were fine. I was so mad! :angry: I had to call their allergist/immunologist in a town 70 miles away to get it orderd and they had no problem doing it. My oldest has been screened twice since all of the tests were not done the first time(lab problem). Good luck and be persistant.

Brooklyn528 Apprentice
so am I a Gold Star Celiac now?? LOL

I had my colonoscopy and it was FINE FINE FINE

I had my endoscopy and he said he could "see damage consistent with Celiac Disease" just from looking, of course he is sending all my stuff to be biopsied. But, I got so lucky, because he actually KNEW something about Celiac and said his former wife had written a book on the diet! I also have a hiatal hernia, and a lot of damage from heartburn type stuff, acid backing up my esophagus etc. So, I am to go gluten free right away, and get an appt with a dietician, and also he wants to recheck my anitbody levels to make sure I'm doing well on the diet!! I feel FANTASTIC!!! All these years of garbage and I finally have something I can TREAT! I will be HAPPY to eat gluten free the rest of my life!!! Thank you so much for your prayers and kind thoughts today also. I appreciate them all. And thank you for the support on this board. I will be sticking around and trying to educate everyone I know about Celiac Disease. Next, I will be getting my 3 children tested.

Just wanted to say that I am very happy to hear of your great doctors. Finding a good one is always a positive. I hope things start going your way. Also, good luck with your children. I just started working on getting things taken care of concerning my children. I can't bear the thought of them having to deal with the things I have had to already. Good luck in all you do! :P

ravenwoodglass Mentor

I am glad you were able to get a definate answer. Welcome to the family. I hope you are feeling great soon. Make sure you let all your first degree relatives know, brothers, sisters etc as well as doing the testing on your children.


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ang1e0251 Contributor

I'm so glad you have the answers! Now for a new life of great health for you and your family. Welcome into the group, hope you get the results for your children that they need.

Nadia2009 Enthusiast

I am so happy for you not happy you have celiac but it feels good to have answers. I am just expecting the same diagnostic. I did the celiac blood test for the second time this year and this time, I made sure it is the whole panel. My blood test was done in late September and it seems like I can't have results until late October and I am wondering if that means something.

Nadia

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    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
    • knitty kitty
      @Colleen H, I have had similar reactions and symptoms like yours.  I started following the low histamine Autoimmune Protocol diet developed by a doctor with Celiac Disease herself, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, is very helpful in understanding what's going on in the body.   Not only do you have antibodies attacking the body, there are mast cells spreading histamine which causes inflammation.  Foods also contain histamine or act as histamine releasers.  Our bodies have difficulty clearing histamine if there's too much.  Following the low histamine AIP diet allows your body time to clear the excess histamine we're making as part of the autoimmune response, without adding in extra histamine from foods.  High histamine foods include eggs, processed foods and some citrus fruits.  The AIP diet allows meat and vegetables.  No processed meats like sausage, luncheon meats, ham, chicken nuggets, etc. No night shades (potatoes, tomatoes, peppers, eggplant).  No dairy.  No grains.  No rice.  No eggs.  No gluten-free processed foods like gluten free breads and cookies.  No nuts.  No expensive processed gluten-free foods.  Meat and vegetables.  Some fruit. Some fruit, like applesauce, contains high levels of fructose which can cause digestive upsets.  Fructose gets fermented by yeasts in the gastrointestinal tract.  This fermentation can cause gas, bloating and abdominal pain.   The AIP diet changes your microbiome.  Change what you eat and that changes which bacteria live in your gut.  By cutting out carbohydrates from grains and starchy veggies like potatoes, SIBO bacteria get starved out.  Fermenting yeasts get starved out, too.  Healthy bacteria repopulate the gut.   Thiamine Vitamin B 1 helps regulate gut bacteria.  Low thiamine can lead to SIBO and yeast infestation.  Mast cells release histamine more easily when they are low in Thiamine.  Anxiety, depression, and irritability are early symptoms of thiamine insufficiency.  A form of thiamine called Benfotiamine has been shown to promote intestinal healing.   Thiamine works with the seven other B vitamins.  They all need each other to function properly.   Other vitamins and minerals are needed, too.  Vitamin D helps calm and regulate the immune system. Thiamine is needed to turn Vitamin D into an active form.  Thiamine needs magnesium to make life sustaining enzymes.  Taking a B Complex and additional Benfotiamine is beneficial.  The B vitamins are water soluble, easily lost if we're not absorbing nutrients properly as with Celiac Disease.  Since blood tests for B vitamins are notoriously inaccurate, taking a B Complex, Benfotiamine, and magnesium Threonate, and looking for health improvements is a better way to see if you're insufficient.   I do hope you will give the low histamine AIP diet a try.  It really works.
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