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Rare case of severe celiac symptoms only better with GF + paleo style fat based diet?

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Celiac Disease
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Posted 5/12/2016 9:33 PM (GMT 0)
I've been on a dramatic journey with weight loss and extreme feeling of fullness. I'm wondering if others have experienced something similar:
My symptoms are severe stomach & digestive issues. Specifically, I experience following: feeling of fullness - it feels like I got a knot in my stomach and I want to throw up after each meal but I'm hungry at the same time (!), short breath, lack of appetite and weight loss. I suspect I have a gluten sensitivity, even though the medical tests came back negative. Did blood works and other tests. The NHS docs say everything is fine. Waiting to see a specialist. They are useless to me. I'm continuing to loose weight, energy and strength and they just talk about IBS and other stuff. I'm 163 cm and lost weight from 59 to 55kg. I'm clearly underweight now and feel as weak as I've never felt in my life before.

I have done my own experiments and feel much better on a gluten free + fat based diet (Paleo or Atkins style). The crazy thing is I've tried a GF diet alone with hardly any meat and reduced fat consumption for about 7 weeks and couldn't feel any improvement. Is that a sign that it might not be celiac disease?
I've also briefly tried fat based diet without GF and felt no improvement at all. If I eat gluten it takes a couple of days for me and then I feel bad again. Specifically, it seems that when I'm on a GF + fat diet it takes me about 11 - 14 days to feel better. After that my energy just kicks in like crazy. Conversely, I can eat gluten for approximately the same time frame until I feel really bad again. I feel no impact on the day / day after when eating gluten.

Does anyone experience similar issues?
Posted 5/13/2016 4:25 AM (GMT 0)
Celiac Disease is an autoimmune disorder triggered by gluten (but you know that I am sure). If you do have CD, it can take time to ramp up antibodies (and a very long time to reduce them -- like a year or more!) So, something with gluten you ingested a week ago, might take a week or two to cause symptoms that can last for months!

Exactly which celiac antibodies tests were taken? I am not familiar with NHS testing. They might only order the TTG iga and iga deficiency tests which catch most, but NOT all celiacs. I would find out exactly what tests were given. Get copies of your lab tests. Research! Have they tested you for gastroparesis (slow stomach emptying)?

Your only other option would be to remain gluten free and consider yourself a celiac. Add plenty of fats, veggies, meats, fish, and some fruit into your diet. Watch for cross contamination. Avoid GF processed foods until you have healed. Stick to the diet for six months minimum.

Good Luck!
Posted 5/13/2016 12:22 PM (GMT 0)
Hi cyclinglady,
Thanks for getting back to me. I resonate with what you are writing. I need to contact the doctor to find out what kind of tests exactly they did. Will do.
Have not been tested for gastroparesis but doing some Google research, I have quite a few of those symptoms. I'll mention it to the doc.
Thanks again
Posted 5/14/2016 11:10 AM (GMT 0)
just pass on the docs and the tests for right now - it seems as if you have enough information to move forward - just live gluten free for at least 6 months and see where you're at that point -

gluten issues come in all shapes and sizes = certainly one diagnosis does not fit all - just because you test negative for celiac, doesn't mean you don't have a problem with gluten - and maybe some other things -

i had to quit all grains before i found relief - GF was not enough - hopefully you'll be ok with just avoiding gluten - although grain free is not a problem for me -

good luck on your journey !


edit: just read cyclinglady's post = agree with what she said - excepting tor the testing part ! wink
Posted 5/14/2016 12:57 PM (GMT 0)
I've been underweight for a long time. At the age of 25 and 6ft height I weigh around 60 kgs, that too when I've gained 5 kgs in the last 8 months. I've asked my GP and he negated any chance of Celiac disease. I wonder if I should seek a second opinion or just carry on with regular diet as I have for the past 8 months.
I must add that I did not pay attention to my diet in my years in College. Ate only twice a day or less, but I was underweight before I joined College too.
Please help.
Posted 5/14/2016 4:14 PM (GMT 0)
Hey juststud,
Thanks for getting back to me.

Here are my test results:
https://drive.google.com/file/d/0BxlGlxMNAbBUXzgweDkxY0IzcUk/view?usp=sharing

I didn't know that you can also have issues with other grains. Do you mean things like oats? So far I think it's only gluten.

the_one_with_Unagi:
It's a matter of how bad you feel. I felt awful and was forced to try out anything to improve my dietary situation. If you feel alright then you are fine. If your back is against the wall, it will be easy for you to rigorously cutting out any gluten for 4 weeks and see if you get better. Just add some organic locally raised meat and healthy oils like olive oil, coconut oil, nuts and avocados and see if you see an improvement.
Posted 5/14/2016 8:27 PM (GMT 0)
Celiac disease should be ruled out before going on a GF diet? Why? 1) Celiac Disease is genetic. That means all first-degree relatives should be tested. 2) It is hard, @#$%ing hard, to maintain a GF diet. for life. Without that diagnosis, people usually give up the diet. 3) It can take months to YEARS to heal from celiac disease, so testing it out for a few weeks is useless 4) Some people are desperate because they are getting inadequate health care, so going gluten free is worth a try. My husband did this 15 years ago (I am officially diagnosed), but he'll tell you that I get WAY more support from medical, family and friends.

Everyone has a different situation, so they must make the best decision they can in trying to resolve their health issues.

(about 10% of celiacs react to even certified gluten free oats.)
Posted 5/23/2016 9:44 AM (GMT 0)

Claus G said...
It's a matter of how bad you feel. I felt awful and was forced to try out anything to improve my dietary situation. If you feel alright then you are fine. If your back is against the wall, it will be easy for you to rigorously cutting out any gluten for 4 weeks and see if you get better. Just add some organic locally raised meat and healthy oils like olive oil, coconut oil, nuts and avocados and see if you see an improvement.

Thank you for getting back to me. I used to have regular episodes of dizziness, which I might add have reduced in the past 6 months when I came home to live with my parents. Yet, I get tired soon and my mind is unable to concentrate and I feel sleepy, like always. It has reflected on my productivity in the office. Could you please suggest some vegetarian options, I have no qualms about dairy products.
Posted 5/28/2016 8:13 PM (GMT 0)
Claus,

Looks like you did not receive the entire celiac panel. You might ask for a complete panel, but it might be a waste of time considering you are already gluten free.

I think you are not getting it. Yes, gluten triggers celiac disease which is an autoimmune disorder. Eat gluten, even a tiny crumb can set off a flare-up that can last for months and wax and wane. It is like lupus or MS, but those have no known triggers. CD is not an allergy and does not resolve within days after gluten leaves your body.

Perhaps more research.
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