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Doctor/dietician Appt Tomorrow...

Lilypad517

By Lilypad517
in Coping with Celiac Disease

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Lilypad517 Rookie
Lilypad517
Posted

Hello all. I am pretty new here. I was diagnosed with biopsy confirmed celiac a couple weeks ago, and my follow up appointment as well as a meeting with a dietician is tomorrow. I am very nervous, but hopeful for more information about my individual needs. I have been gluten free for 3 months, and feel better. However, I was still getting glutened frequently despite careful research and diligence to a gluten free DIET. I say it like that because my md suggested i check my daily medicines and voila! Gluten. Every day. For the past year I have been on them. I got them changed last week and feel amazing. My only complaint is severe indigestion after I eat. Like my stomach doesn't move the food out as quickly as it shoud, leading to fullness, burping like an old man. It doesn't feel like a gluten attack, those knock me out and put me in the bed for days! I hope it is just my body hasn't healed yet.

Any advice for my appointments? This has been the most excited about it I have been since diagnosis because I will FINALLY get some answers! Thank you all, browsing this board has been helpful in so many ways!

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Booghead Contributor
Booghead
Posted

No advice here, but good luck! B)

bonnie blue Explorer
bonnie blue
Posted

Hello and welcome, after reading this, your symptoms, the indigestion, fullness, and burping, talk to your doctor about gastroparesis (sp sorry) or slow stomach. They do have a very simple test for this, and basically you eat smaller meals 6 times a day, and they put you on a PPI for the indigestion. Again please just an observation, but be an advocate for your health. I hope all goes well for you, let us know how it all comes out. :)

Lilypad517 Rookie
Lilypad517
Posted
  • Author

I had thought that. Is it a sign I am still getting gluten? Or an effect of damage? I feel great aside from that!

bonnie blue Explorer
bonnie blue
Posted

I had thought that. Is it a sign I am still getting gluten? Or an effect of damage? I feel great aside from that!

Again just a suggestion, my sister-in-law has this and she is basically maintaining a good lifestyle with the dietary changes. And if your not having your regular gluten side effects I wouldnt think that you are getting gluten in your diet. Talk to your doctor about this, and your dietician they should be able to help you out. Good luck and again let me know how it turns out.

mushroom Proficient
mushroom
Posted

It could just be a combination of taking time to heal, and slow motility. It could also be that our pancreas is not producing enough digestive enzymes, and an enzyme supplement might help with this.

Make sure that your doctor is aware that he needs to check your nutrient levels if he has not done so already - things like Vit.D, B12, folate, iron/ferritin, potassium, magnesium. Also your thyroid function. These can all be affected by the malabsorption of celiac disease.

Good luck with your appointments. :)

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    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

      By suek54 · Posted

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

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