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Jess07

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Jess07 Newbie

I was diagnosed during of April of this year, and in the process of getting so sick, I lost nine pounds. I'm already a very naturally skinny person, normally weighing only 92 pounds, so I get very weak, very fast. I missed a lot of school that year, and eventually skipped the last week of school. Because of that, I didn't have to take my finals my freshman year.

I am now gluten free, lactose free, and soy free. I'm not even sure exactly how long this has been affecting since I've been lactose intolerant for 6 years and the gluten only started affecting me very badly 7 months ago, maybe the gluten caused the lactose intolerance?

My weight was down to 83 pounds and a couple of weeks ago I finally made it up to 90 pounds on the dot, and then a week later, it drops down to 86.5 pounds! It's never gone down that much at once!??? :huh:

It's back up to 88.5, but I haven't goe it to go any farther up.

I feel like I'm getting cross contamination at least every weekend, maybe a little exaggerated, :rolleyes: , and an upset stomach most days.

What can I do?


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buffettbride Enthusiast

Maybe you could share what your typical foods are over a course of a few days and we could spot something suspect.

Also, I'm guessing you live with your parents and I'm wondering if your whole house is free of gluten. If not, there's always risks of icky gluten getting into your food.

Food is tricky.

I hope you are feeling better soon.

Daughter-of-TheLight Apprentice

You're probably getting trace gluten is something or other. That happened to my mom. She drank Rice Dream rice milk and it contains barley. :rolleyes: Very annoying. But from my limited experience, that's what's probably happening.

Guest j_mommy

I would defintly start doing a food diary(always keep it with you and keep track of everything that goes into your mouth) and right any sypmtoms you have down on that day as well...I use a little planner book. It helps narrow any problem food down! Much easier than doing an elimination diet.

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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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