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Parent With Symptoms


betsyly

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betsyly Newbie

My mom had guillain-barre about two years ago.I have read that celiac disease can sometimes follow a viral infection. She has been sick non-stop since she had the guillain-barre.

She has constant problems with urinary track infections which led to the diagnois of interstitial cystitis,which cause to her to have to change her diet. She did good for awhile,but now is having severe stomach pains,vomiting with almost every meal,and extenvise weight loss.An d she doesn't sleep more that a couple hours a night.

Some days or weeks are good for her others,are to difficult to deal with. I would like to see my mom enjoy life again,and be able to enjoy eating without of fear of whether or not it is going to cause a problem.

If anyone can give me some information,or their thoughts on this,could it be caused from the guillian-barre,and what can be done to help her

Sincerly

Betsy Young


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Guest jhmom

Hi Betsy, with the health problems your mom is experiencing she really needs to be tested for Celiac Disease either with blood-work through her doctor or through Open Original Shared Link with a stool panel test. It is very simple to do and you get your results back usually within 2-3 weeks.

If your mom has health insurance I would try the blood-work first then if you do not get the answers you are looking for Enterolab would be a great 2nd opinion.

If she doesn

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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