So about 2 years ago i was tested through blood work for the antibodies of celiac. The numbers came back elevated however I could not afford to see a specialist at that time. Fast forward 2 years later (now) I just had blood test rerun because i have been feeling very sick. My doctors office called me today and told me they need to get me into a GI specialist because my number are HIGH, like higher than the elevated number I had 2 years ago. They told me this is why I have been feeling as sick as I have been. I was told to go on a strict gluten free diet until I get in to see the specialist. Im just wondering if anyone else suffers from this? How hard was it to find items that are gluten free? And how do i ease my mind of knowing I will have to be put under to have an Endoscopy done? I have never in my 34yrs of life had a medical procedure done and I am scared to death!
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maldonado85
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Hi maldonado85, first of all I'm a diagnosed coeliac and what concerns me is you being told to go gluten free before seeing the GI specialist, as in the UK diagnosis is by a biopsy where they do an endoscopy and look for damaged villi, so we are told not to go gluten free until we've seen the Gastroenterologist and had a biopsy.
As for eating gluten free it is very doable with many options in the shops and lots of foods are naturally gluten free. We have a gluten free topic section on here with lots of recipes.
At first all I could see was what I couldn't eat and gradually I started to look at all the foods that I can eat and I eat a whole food gluten free diet and I feel so well it's well worth the effort.
One thing worth bearing in mind is all coeliac/celiac have a fear of being made ill by food made by others and it's very important to avoid all gluten as it's a toxin as far as 'our' bodies are concerned. So if you embrace your GF diet and avoid processed foods a gf diet can be a very healthy diet.
The most important thing to remember is you are not alone as we have many celiac and gluten intolerant members on here, so you're in good company on here.
Here's a link to GIG and it's Celiac awareness month this month:
Just expanding on this, I always highly recommend making a list of foods you already know how to make, that are naturally gluten free or easily adaptable. Even if it's just "baked potato" or "stir fry with rice noodles", making a list of at least 30 meals really changes you mindset.
I presented my OH with a list of 50 meals when he was going through the grieving-type phase, and it was well worth my while!
Thank You so much for that feedback. I know they here in the states they also do an Endoscopy to do a biopsy as well. I had wondered why my family doctor had told me to do gluten free until I see the GI Specialist because I’m sure they need that in my system for a true diagnosis other than what the blood test are showing. I go in the beginning of July so maybe I should give the specialist a call and see what they tell me. Thank you for the link I will check it out!
I'm concerned your doctor has told you to go gluten free now. Please don't do this. If you are going for an endoscopy, you need to continue to eat gluten (just a slice of bread a day) until this appointment.
Do you know what your antibody levels are? Most doctors would diagnose coeliac on the blood test alone, if the level is over 100. Find out your level, and discuss this with your doctor, as it can save you the expense of the endoscopy.
I presume you're in America? When we've visited, we've been finding more and more restaurants are educated about the illness. There's a fantastic app "Find me Gluten Free" that you can use to find tips and restaurants.
Food-wise, it's easy to buy gluten free by buying foods naturally GF, such as fruit and veg. You'll get used to it!
Yes I am in America. My IGG test came back at 9 which here is high. Anything 6 and above is high. My IGA is only a 1 which is normal. Im not sure if there is some different number besides these or not. My ESR test for inflammation in the body came back high at 29. Yeah I already eat a bunch of fruits and veggies because I really love them! I really hope to get answers because feeling like crap really sucks. Thank you for sharing some helpful tips!
Hello. I have non-celiac gluten sensitivity, and I believe that a LOT of other people do too, they just don't know it. I read a book back around 1990 that explained how our bodies can handle pretty much everything when we are young, but as we get older, it simply cannot. As we get older we have to be more watchful for developing sensitivities. Gluten really does a number on my poor body, but it is not easy to stay away from it. When I have a wheat binge I get brain fog, my arthritis hurts a lot more, I get great fatigue, and worst of all I BLOAT UP. When I am not eating wheat, my feet & legs are perfectly normal size, but if I eat wheat for more than 3 days in a row, I bloat up all over, my feet get huge and my legs harden like tree trunks. THIS WATER RETENTION IS VERY DANGEROUS for people with heart or lung problems. If ANY of you have bloating anywhere, please at least TRY giving up gluten and just see what happens. (This is the only real test for non-celiac gluten sensitivity.) You must stop all gluten for at least 21 days to see the bloating all disappear. You'll be amazed at how skinny your feet get after 21 or so days. That means there is less fluid in your heart and lungs also, so is very important for us with heart disease. It is not easy to stay away from gluten. Even tho it makes me feel like hell, I still cannot control my cravings all the time. But a couple days here and there is ok, I only feel the symptoms after 3-4 days of gluten. (Of course if you have real celiac disease, that is a different animal altogether -- you cannot ever have any gluten ever.) Note: Semolina wheat (mainly used for pasta) is worse for you than bread wheat, and causes more problems. Don't ASSUME or let your doctor tell you) that your bloating is normal or caused by heart, lung or kidney problems, etc. TRY giving up gluten for 21 days or so, and SEE. This test will tell you the truth.
Thank you for that information. I have an email sent over to the GI specialist as to what kind of diet I should be following for now. My symptoms include: bloating, feeling full after a couple bites, feeling sick and nauseous after I eat, pain in my stomach,extremely tired all the time, I have also been getting sharp pains in the right side of my head several times a week. I havent had weight lose but i did have weight gain. I have been eating gluten free for the past 3 days and even though it is only 3 days i feel like I have a bit more energy and I have not had much bloating. However I feel like within a couple hours of eating Im starving. Almost like I cant get enough of eating. I have been eating tons of fruits, veggies, yogurt, meat and smoothies but besides that not a whole lot of anything else. I really just can not wait to see a specialist and find out for sure what is going on!
This is interesting. When I give up the gluten I actually lose my appetite after a few days (once the old gluten is out of my system). It's like all the gluten stuff, which is mostly all carbs, makes me hungry all the time. Once you eliminate the carbs based on GRAIN, these appetite triggers should slow down. Give it another week or so and see if your appetite doesn't slow down too as all the old gluten is cleaned out of your body. The book WHEATBELLY gives an excellent explanation of how humans should not be eating any "seeds of grasses", since we are not built to digest them properly, like cows are. All grains are seeds of grasses, even rice and corn. Also another excellent book, DANGEROUS GRAINS explains why we are simply not built to digest grains, and would get healed from all kinds of problems if we avoid them. It's not just celiac disease that causes havoc in our bodies -- non-celiac gluten sensitivity can also cause all kinds of problems and make you feel like hell. And I personally feel that most people do develop this sensitivity as they get older ---
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Home made gluten free bread with ground quinoa and sesame seeds 
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Utterly confused! GP friend talking 'Bol*ocks'! :)
