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Could It Be Celiacs?


frustratedgirl

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frustratedgirl Newbie

Hello, This is all new to me, just wondering if there is anyone else out there with the same symptoms I have..I have gone to the Dr. two years ago with symptoms of Chronic fatigue and lethargy, Cotton Mouth thirst, Brain Fog, Anxiety, waking up exhausted, and a "heavy feeling" like gravity was just always pulling me down....The Lethargy was worst of the symptoms, just getting up the stairs, or doing laundry took so much out of me, this caused me to do a lot of heavy breathing as well...And I am not at all over weight..At that time, I was a 40 year old active woman who was surprised to hear that I was Pre Diabetic and had hypoglycemia...The Dr's just put me on an All Wheat Diet...."No White, No Sugar.." Unfortuneately, I still had all the same symptoms, and they were getting worse..I felt like no one was believing me, including my husband..This was really causing me to shut down...Fortuneately, my husband came around, and told me that we needed to figure this out......Two years later, Went to the Dr. again, I STRICTLY told her, I new it had to do with my food intake..Of course, she ignored me, sent me for blood work, and sent me home...Once the blood work came back normal, she was pretty much done with me..Frustrated, however, my husband and I decided to lay off the wheat and WOW, Two weeks now, and I feel GREAT....I changed Dr's, and am finding he is ignoring me as well regarding the food intake..He wants me to get tested for MS, or he thinks it's Fibromyalgia..However, I really don't want to waste anyone's time, I really think it has something to do with wheat or Gluten, or both.....BTW, my sugars are all in the normal range as well...Please help....I am so frustrated..

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Takala Enthusiast

Fire this doctor's insurance money grubbing A$$, immediately, and find one who WILL work with you on your gluten intolerance. Don't bother making appointments or going to somebody who is just there to milk your insurance for whatever he or she can get out of it, extending the fake "diagnostic process" over as many years as possible, just for profit. Mine got to the point where I was having severe MS - type neurological symptoms, including ataxia, and in spite of my telling the doctors I had a distinct "problem with grains," this is when I discovered that my former dishonest as he(( neuro would actually withhold test results under the guise of "no appointments available for 2 months," "canceled appointments with no warning" and lie to me, to my face, regarding certain tests. Turns out I had brain lesions, which are typical of advanced celiac, and she actually told me I was a head case making things up, having no idea I had gotten said test results and guess what, they were not MS. Bye.

Cotton mouth can be a symptom of Sjogren's, a related condition which sometimes develops with celiac/gluten intolerance.

We also tend to all be slightly hypo- thyroid, and can develop auto immune thyroid disease which will not show up in the regular tests unless they test for ANTIBODIES, not just the levels of the different hormones. This can also make one exhausted.

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Kansas Rookie

I had many of your symptoms and your problems with doctors, only I was 58 years old. Symptoms kept mutlipling, with more weird things happening everyday. Neighbor kept telling me it was gluten. I am self diagnosed as I could not do any more doctors or specialists, I was literally dying. I tried the diet and have steadily improved and now 61 and healthy, my energy is back. All my many symptoms have disappeared. I eat mostly whole foods, no dairy, no soy and only certified gluten free labeled products, that is the only way I stay healthy.

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    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
    • Tanner L
      Constantly! I don't want everything to cost as much as a KIND bar, as great as they are.  Happy most of the info is available to us to make smart decisions for our health, just need to do a little more research. 
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