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Finally...Maybe...A Diagnosis

sc63

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sc63 Newbie
sc63
Posted

After years of being ill more than well, I have found an internist who has discussed Celiac with me. I have a biopsy scheduled on the 12th of Feb, and have had tons of blood tests. I have never heard of Celiac disease until a month ago and have been researching online and through books thoroughly. He seems quite sure that the test will come back positive. The symptoms I have dealt with are all right on board. I have been told that my body rejects iron, b-12, and most vitamins and minerals. I stay fatigued, always have stomach issues, headaches, etc. The last 2 specialists I have been to suggested a blood transfusion. This internist has given me hope, and I should know more soon. I'm grateful to have found celiac.com and hope to finally get my life on track. It seems difficult but very dealable from what I've read. Hope everyone has a great weekend.

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cat3883 Explorer
cat3883
Posted

Like you, I had never heard of Celiac Disease until my doctor finally tested me. I had been ill for years (I am 50).

I was diagnosed 15 months ago and I feel like I am 20. I had migraines, depression, brain fog, fatigue, irritability, terrible PMS, and stomach aches. Within 2 weeks of going gluten free my symptoms started going away. A gluten free diet really isn't hard. Even though there are many processed gluten free products, try to stay away from them while you are healing. I ate (and still do) meats, vegetables, and fruit. I also noticed for the first 6 months or so my body did much better with cooked vegetables. It has been 15 months and I have not had one migraine. Good luck to you.

muchmalignedminx Newbie
muchmalignedminx
Posted

Hi and welcome:-) Im very newly diagnosed as of 5th Feb 2010 and still coming to terms with what I have. My doctor and I were convinced I had Crohn's after the Celiac test came back negative. So the last 3 months has been a roller coaster of emotions and experiences. Thankfully I finally have a diagnosis and after lots of blood tests and having had gastroscopys and colonoscopys and lots of biopsies. I think most of us once we know what we're dealing with can cope with just about anything and thats how Im feeling now if a little overwhelmed by it all. Having gone through a weekend of cold turkey having started on the road to being gluten free; with the most horrible mood swings and being tearful and angry also with the physical pain but today I feel improvement and a light at the end of the tunnel. Fingers crossed it continues. Good luck :-)

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    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
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