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Need Some Encouragment


Mama of 6

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Mama of 6 Rookie

Hi everyone, I am new here, and am so glad to find this forum. I have had a panel done and it came out negative, I am seeing from the other posts that it can sometimes be a false negative. I was so disapointed because I thought it would give me a clear answer. I have had a biopsy done in 2006 because of some other problems with my stomach. I just recently whent back in to see the same GI Dr. and he said my biopsy looked normal. I have been gluten free now since the first of may and felt remarkably better the first three days. Then felt crappy for about 3 days, then felt better again. I was haveing some joint pain so I took Norco (generic for vicoden) and I am feeling HORRIBLE. Every symptom has came crashing back and have been down for three days. Did I mention I have 6 kids all under the age of 11. I started feeling my worst symptoms 6 weeks after the birth of my baby and was told I have Fibromyalgia. I have been sent from dr to dr and specialists all claiming I have fibro. They think I am very crazy because I keep telling them I don't. I also called the company that makes the Norco and they do not use gluten products. So here is my quesion, is it normal to feel good and then bad? Do you think it was from the Norco? Is it possible that I have a gluten intolerance?

Also I should mention that I have had every test in the world done (it seems like) and everything came back normal except I have Gasterpareses which is a slow emptying of the stomach and giagantic cysts on my overies. and suposibly I have fibro. Someone please help me and give me direction so I can get back to being me. Thanks ahead of time for all the support!


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ciamarie Rookie

Do you have the actual test results, and which tests they took? If you're now gluten-free, it's likely too late to have more tests done, but if you share details on what you have some of the more knowledgable folks should be able to let you know if perhaps you're borderline or something?

Also, yes false negatives seem to be somewhat common. It's also not unusual to go back and forth on feeling good, then not so good when first starting out. There's also a possibility that there are other ingredients that are causing problems, it took me a while to discover I also need to stay away from MSG as well as sulfites (preservatives). I know certain starches and maltodextrin in supplements cause issues for me, and it turns out they fall under the sulfite category. Keeping a quick food diary if you can might be helpful.

Mama of 6 Rookie

Do you have the actual test results, and which tests they took? If you're now gluten-free, it's likely too late to have more tests done, but if you share details on what you have some of the more knowledgable folks should be able to let you know if perhaps you're borderline or something?

Also, yes false negatives seem to be somewhat common. It's also not unusual to go back and forth on feeling good, then not so good when first starting out. There's also a possibility that there are other ingredients that are causing problems, it took me a while to discover I also need to stay away from MSG as well as sulfites (preservatives). I know certain starches and maltodextrin in supplements cause issues for me, and it turns out they fall under the sulfite category. Keeping a quick food diary if you can might be helpful.

Thank you so much for your reply, I will start a food journal and try to stay away from the prestervatives. I just want to get to feeling better! I should get the test results back for my kids today I am scared and excited at the same time.

Razzle Dazzle Brazell Enthusiast

I have read a lot about celiac sufferers developing intolerance and allergies to other substances. I guess because it makes your immune system very inflammatory and sensitive. I think it woildnt be a bad idea to get tested for other allergies as well.

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    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
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      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
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