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Blunted Villi Question


magentarose

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magentarose Newbie

Hi all,

I am frustrated with doctors. I have been sick since I was a child, I'm now 49. My symptoms are: bloating, diarrhea, ataxia, neuropathy, blurred vision, joint pains, chronic sinus infections, osteopenia, fatigue, period of cognitive decline, on and off anemia, 2 possible TIA's., extreme muscle weakness, and other strange symptoms. I have been diagnosed with Undifferentiated Connective Tissue Disease, possible crohn's disease or MS, or Lupus. I have several doctors that follow my case, but I have never gotten a firm diagnosis.

I recently had another upper and lower scope. This is the first time I have had a biopsy of my small intestines. The results of my lower biopsy was some mild inflammation, rare diverticulosis, my upper biopsy showed blunting of the villi in my small intestine. I had a pill cam 3 years ago, that showed some ulcers, and that was when they said possible mild crohn's. Do you know if other disease cause blunting of the villi? My doctor ordered a celiac panel this week. They had ran this test on me 5 years ago, and it was neg. At the time I didn't know that IGA deficiency was important, I just read that on your site. I was diagnosed with that 20 years ago. I did call my doctor and let her know I was IGA deficient, they didn't seem to think that was a problem.

My mother's aunt was diagnosed with celiac about 4 years ago. My grandfather died of colon cancer 2 years ago, now I wonder if he had celiac also.

My question really is "If you have blunting of the villi, and get a negative lab, can you still have celiac?"

Thanks, for any help.

Jo


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ang1e0251 Contributor

Welcome to the forum, Jo. We're glad you are here. Yes, you can have negative bloodwork and positive results of an endoscopy. If you are IGA deficient, you will probably never test positive on your celiac panel. Your positive biopsy should be enough to dx you but if your dr's are still wavering, you can go right on the gluten-free diet, yet today, and the positive dietary response should do the trick for convincing them.

Some of your symptoms will show a fairly quick response and still others may take some time. Because you've been battling this illness so long, some problems may never clear up completely. Also you may show other food sensitivities over time. Be aware of this if you still don't feel 100% after awhile. The best way to start is with simple whole foods like meat, vegetables, fruit, nuts and beans. Use single ingredient spices and probably hold off on dairy for a couple of months. Keep a food journal and note any symptoms there as well. When you have a handle on this method of eating, then you can add new foods one at a time every few days. This will help you identify any other foods that bother you right away.

Thanks for joining our group and feel free to ask anything you wish. We're here for you.

nora-n Rookie

Yes, blunted villi are usually celiac. About 20% of celiacs with lots of villi damage can have negative blood tests. You need IgG type tests if IgA deficient.

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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.
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      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.  
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      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.
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      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. 
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      @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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