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I still don't feel much different.

Fbmb

By Fbmb
in Coping with Celiac Disease

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Fbmb Rising Star
Fbmb
Posted

So I've been gluten free for 6 months. I gave it up the day of my endoscopy and never looked back. I was a fairly silent Celiac. My blood work was always normal (never anemic, malnourished), I didn't have all the horrible symptoms that others do. I think I caught it early and that those things were definitely coming. Since going gluten-free I notice that my belly is better. I still have days where it's not great, but in the last month I've noticed that it's consistently pretty good. I don't hardly ever get stomach aches. I've lost 16 lbs and I'm never bloated. Those things are good. But, aside from that, I don't feel much different than I did before. I'm still tired a lot. But I have two kids under 4 and I run a non-profit. I have horrible anxiety and that's only increased since finding out about my Celiac (it's health anxiety and it freaked me out big time that I have an AI disorder). I feel like my complexion looks the same (never had an issue with that). 

I just read stories on here that talk about how the brain fog lifted quickly, or how people don't feel tired anymore, etc. I'm still a zombie sometimes. Has anyone else has this experience? Maybe my body was doing such a good job compensating for my Celiac that I wasn't really very symptomatic to begin with - and that the tiredness I feel isn't due to gluten. 

Oh, FYI, I had a full thyroid panel done in December and it was all normal. 

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cyclinglady Grand Master
cyclinglady
Posted

Some of take longer to heal.  Cut yourself some slack.  A busy working mother with small children is both rewarding and taxing!  

You know what  I asked for on Mother's Day?  No cooking, food prep, or cleaning.  I do not want to go out (just too busy of a day for most restaurants  and my fav gluten-free restaurants are a state away).  I just want to take care of myself and not others.   I guess I have had a history of ditching my responsibilities on Mother's Day.  My SIL would watch the baby at her mother's house (with my hubby) and I would ride my bike to the beach, order a coffee and read!!!!).  I celebrated Mother's Day on Saturday with my Mom.  When my daughter was old enough to want to make me breakfast, I opted for lunch after my bike ride and coffee.  

Hang in there!  

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      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
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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      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
      Small Bowel Resection 12 inches

      By Ello · Posted

      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
      Small Bowel Resection 12 inches

      By trents · Posted

      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
      Small Bowel Resection 12 inches

      By Ello · Posted

      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
      Small Bowel Resection 12 inches

      By trents · Posted

      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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