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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- Wheatwacked replied to somethinglikeolivia's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms15Am I celiac or not?
Just like you cannot be a little pregnant, you cannot be a little Celiac. Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,00... -
- somethinglikeolivia replied to somethinglikeolivia's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms15Am I celiac or not?
Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!- 1
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- Scott Adams replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1This Roller Coaster Ride Needs to Stop
Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG...- 1
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- Zuma888 commented on Jefferson Adams's article in Diagnosis, Testing & Treatment28How Refining the Gluten Challenge May Help Improve Diagnostics for Celiac Disease
Interesting- celiac disease
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- Wheatwacked replied to somethinglikeolivia's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms15
Am I celiac or not?
While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease. Reduced 25(OH)D levels are associated with celiac disease. In celiac disease, gluten can damage these tight junctions, and vitamin D may...- 1
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By Wheatwacked · Posted
Just like you cannot be a little pregnant, you cannot be a little Celiac. Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015. My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer. 70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL; -
By somethinglikeolivia · Posted
Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input! -
By Scott Adams · Posted
Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life. -
By Wheatwacked · Posted
While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease. Reduced 25(OH)D levels are associated with celiac disease. In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. -
I have posted a lot on here and find that the support , advice and information here is much more helpful than anything else.. ever. I am really tired of the back and forth advice in the medical community and I am beyond frustrated and over all of it currently. I will try to keep this as brief as possible. I have positive TTG IGA antibodies - and I have had these every time I have been tested. The first time they were positive I was told I did not have celiac and couldn't have celiac but I was gluten intolerant and to go gluten free. I did this for about 3-4 months, dedicated I might add, and I did feel better. However, my blood glucose went up drastically and since I was already pre-diabetic and insulin resistant already, I was then told to stop the gluten free diet and resume eating gluten as it would be better for my diabetes.I have been on a yo yo diet and roller coaster since between the gluten free and not gluten free. I decided to see a gastro doc and after him promising me I had celiac based on all my symptoms and positive antibodies but we needed that actual diagnosis in order to be treated correctly, and we just needed the EGD with biopsies to have that diagnosis, I reluctantly agreed to go fully on the gluten challenge for 8 weeks prior to having an EGD and colonoscopy, both with biopsies . The gluten challenge was miserable. At first I was horribly constipated, I gained 9 pounds during the challenge, had horrible swelling issues, terrible bloating, looked and felt pregnant, had rashes and itching, couldn't stay awake, had extreme brain fog, exhaustion, speech difficulties, palpitations, tachycardia , menstrual issues, had an insatiable hunger, mood swings, just all the things. All of this to get the tests and biopsies done and they looked "okay" .. so even though I was told to live like a celiac all of the sudden I am no longer at risk.. I am just gluten intolerant. I also have uncontrolled diabetes that they feel is made worse by the gluten free diet, so again after all these tests, but having all the symptoms and still having positive antibodies I feel like I am stuck with the choice in regards to my health of addressing the diabetes or the celiac (still don't believe I am not actually Celiac). So I have been having gluten off and on to try and manage my diabetes, even though most recently, because I have been so physically sick again (that can't be good for diabetes either right??) with stomach pain, burning, diarrhea, stools that are yellow in color and contain mucus, nausea, some vomiting, sour stomach, I was told I need to just eat gluten free so my stomach will improve, and we will just put you on insulin - I don't want to go on insulin yet, and especially if I do not actually have to. I don't understand why I am backed in this corner of feeling like I have to choose to eat for my diabetes or my stomach, but not both, but I am over it. So currently in regards to GI symptoms - I consistently have nausea, vomiting, diarrhea, abdominal pain, gas , bloating, reflux, sour stomach, yellow stools with mucus. I am also exhausted and have been itching. I have been having increased swelling, pain, and horrible numbness and tingling, especially in my hands. I am also having an increase in relentless nightmares and night terrors. I have also been having chest pain and palpitations and tachycardia. I have even tried taking digestive enzymes to help break down gluten - (specifically the Gliadin X) and they just seem to make me feel worse. I have trouble with digestion of things like salads, beans, broccoli, etc. on a good day, and that is even worse when I have gluten on any kind of semi-regular basis. I just can't keep doing this. Mentally, physically and emotionally I am just DONE. I already have a lot of stress in my life.. I am a single mom to a daughter who has her own health issues and is somewhat special needs. I need to be 100% to be what she needs from me, especially with all the running back and forth we have been doing to the doctors and hospitals. So I am no doctor... but I just don't think they are right about any of this. I truly feel I am celiac.. and either the damage just wasn't bad yet, or they just missed the area that has damage, or its all a precursor to full blown celiac (kind of like pre-diabetes/insulin resistance is for actual diabetes). I don't want to live miserable and feel bad all the time. I also don't want my diabetes to be so out of control I have major complications, and I don't feel like insulin is a great option if not truly needed. At this point, if I ever feel like I have a somewhat clear path of what I am dealing with, I feel like I am looking at MONTHS to YEARS of trying to heal my body. Please help!
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