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Got My Diagnosis Today


hsmomof6

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hsmomof6 Rookie

I was referred back to my PCP by the NP at the GI office. The NP had told me I did not have Celiac, even though my antigliadin IgA was very positive, because everything else was negative. My PCP took one look at my blood work and said, "you have Celiac disease." It turns out she has Celiac herself and is very knowledgeable about it. She said I could go back on gluten (been off almost 3 weeks now) and do an endoscopy, but she didn't want to put me through that and had no problem diagnosing me through the blood test and symptoms. It seems weird to feel relieved, but at least I feel like I have an answer now. She told me her story and it was very similar to mine, all the GI symptoms and being tested for everything under the sun before being tested for Celiac. She was actually blood test negative, but biopsy positive.

So, I've been gluten-free for a few weeks and I'm never going back. I am so thankful for the support and information shared on this board. It was really helpful for me in accepting the whole gluten-free thing. It was really overwhelming at first and now I feel a lot better about it. Still mourning some of my favorite foods, but I know I'll find alternatives that won't hurt me.


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kareng Grand Master

I want your doctor! Please tell me you live in the Kansas City area! Please! :unsure:

hsmomof6 Rookie

Sorry, Jacksonville, FL :-(

ravenwoodglass Mentor

Sounds like you have a good doctor. I hope you heal quickly. Hopefully she let you know that all 1st degree relatives should also be tested even if they don't seem to have any issues.

hsmomof6 Rookie

What kind of test should my children have done? I was talking about this with my daughter and son this afternoon.

ravenwoodglass Mentor

What kind of test should my children have done? I was talking about this with my daughter and son this afternoon.

They should have full celiac panels and if they choose to and have symptoms an endoscopy might be something to think about. Do be aware of false negatives so if any family members have symptoms, even ones not GI related like depression, skin issues, fibro or arthritis for examples, a trial of the diet is a good idea even if tests are negative.

In my family I was persistantly tested as I was very ill and text book celiac symptom wise and always came back negative. Both my children and my ex showed up in blood work.

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    • Scott Adams
      Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
    • Scott Adams
      Your symptoms—headaches, dizziness, nausea, irregular bowel movements, anemia, and menstrual changes—along with a family history of celiac disease, strongly suggest celiac disease could be the cause. The mild duodenal changes seen in your biopsy are consistent with early or mild celiac disease, though they could also be due to other factors. The improvement in bowel movements after cutting out gluten is a positive sign, but other symptoms like headaches and dizziness may take longer to resolve as your body heals. It’s important to continue a strict gluten-free diet and discuss further testing, such as celiac antibody blood tests or a follow-up biopsy, with your doctor to confirm the diagnosis. Many people experience a gradual improvement in symptoms over weeks to months, so patience and strict adherence to the diet are key. You’re not alone in this process, and support from celiac communities can be very helpful. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      For people with celiac disease and corn intolerance, most salts, including table salt with dextrose, are generally safe in small amounts, as the dextrose is typically highly processed and unlikely to contain problematic corn proteins. However, if you’re highly sensitive, you might consider switching to pure kosher or Himalayan salt, which don’t contain additives. While bringing your own salt to restaurants or avoiding seasoned foods can feel overwhelming, it’s a practical step if you’re concerned. Many people with corn intolerance tolerate trace amounts of dextrose in salt without issues, but individual sensitivity varies. If your current salt isn’t causing symptoms, it’s likely fine to continue using it, especially given your financial constraints and the challenges of managing dietary restrictions. Focus on what works for you and prioritize avoiding larger sources of corn, like cornstarch.
    • Scott Adams
      Your daughter’s ongoing stomach pains two weeks into a gluten-free diet could be due to her body still healing after months of gluten exposure, as recovery from celiac disease can take time. Her inconsistent eating habits and possible eating disorder behaviors may also delay healing. While she’s now eating gluten-free snacks, her limited intake and emotional withdrawal complicate the process. It’s positive that she’s trying, but recovery may take weeks to months. Addressing her depression and mental health is crucial, as celiac disease can impact mood, and proper nutrition may help. Patience and support are key, but if symptoms persist, consult her doctor to rule out accidental gluten exposure or other issues. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.  
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