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Struggle Steet


webbooo

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webbooo Rookie

Hello, please excuse my rant and wing.

 

I have been Celiac for 5 months and while I have found my anxiety and mood has improved there are on occasions times when I’m really struggling with feeling weak and tied, especially in my arms and legs,  I’ve also lost a lot of weight although my stomach still looks full/fat.  The tied/weakness doesn’t happen all the time but does seem to be a lot, especially recently as well where it comes and goes.   My doctor did some blood tests a while ago and these all came back OK.  I did also see a Naturopath who suggested I eat get more carbs in my diet to help balance my sugar levels which I have tried to do.  I eat an almost full Paleo diet with healthy meals and portion sizes and I still found myself feeling rubbish and if I’m tied at work it’s hard to keep concentrated and productive.  I was originally diagnosed with Celiac disease about 4 months ago and I’m a 35 yr old male.  I don’t want to be super cautious about everything non gluten I eat and beating myself up.

 

I don’t drink alcohol, I don’t smoke,  I usually exercise but can’t with little energy and I eat a good portion of meat/fat so I’m not sure what’s going on.  I’ve done some searching which just leaves me feeling more confused but am just sick of feeling rubbish all the time, it really sucks, and this disease sucks.

 

Its also hard to find good help,  I’m thinking of going back to the doctor but I don’t think he really knows what to look for.

Has anyone else experienced these sorts of symptoms and found ways to overcome it?  I’ve tried being patient with myself but being active is hard.

 

Thanks


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smj7159 Newbie

Hi webboo

I understand your frustration. I was diagnosed the day before last Thanksgiving. Most of what I've learned is from my on research. Has your doctor said anything about you taking vitamins and supplements? They made a difference in me. Because of the damage to small intestines, we don't get what our bodies need. I was found to be deficient in iron and B12. These are needed to make new red blood cells that carry oxygen. Lack of these can be what is making you feel tired all the time. Hope this helps.

etbtbfs Rookie

Do you know whether gut dysbiosis set off Hashimoto's that whacked your thyroid? Very common. Unfortunately MDs aren't very good at diagnosis and treatment. Check out the web to see what Kent Holtorf, Mary Shomon, and Dana Trentini have to say.

smj7159 Newbie

I hadn't had any symptoms related to Hashimoto's. All thyroid levels were normal for me, but iron and B12 were very low. I had an upper GI that showed damage to small intestine followed by Celiac serology to confirm Celiac Disease. Supplements have helped me a great deal. I have more energy than I've had in years.

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    • trents
      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
      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
      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
      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
      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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