Self Diagnosed/brand New Here

[Leiana]

Hi everyone

Brand new here and i have been reading all the posts for the last couple days. i cannot beleive it cause its like reading about myself. Have been going thru this most of my life and never could figure it out until now. I have been told over the years i have IBS, colitis, irritable bowel etc etc. now i have lost tons of weight......not intentional, but just afraid to eat cause of the pain. My house is totally gluten right now so i have no choice but to eat some of it. weight is 105 and 5'6. i have an appt with my GP this monday and an appt. with an endocrinologist in another month. what should be my plan of action right now???? should i be seeing a gastro dr too. Would the GP be able to run blood test and find out that way. I need gluten free food but dont know where to start and what to eat right away, i quess i have to find a grocery store that sells gluten free products. totally lost!!!!!!!!! Please what foods should i start out with. I need to gain at least 30 ibs back. i look like a skelaton and scared. thank you

[mushroom]

Hi everyone

Brand new here and i have been reading all the posts for the last couple days. i cannot beleive it cause its like reading about myself. Have been going thru this most of my life and never could figure it out until now. I have been told over the years i have IBS, colitis, irritable bowel etc etc. now i have lost tons of weight......not intentional, but just afraid to eat cause of the pain. My house is totally gluten right now so i have no choice but to eat some of it. weight is 105 and 5'6. i have an appt with my GP this monday and an appt. with an endocrinologist in another month. what should be my plan of action right now???? should i be seeing a gastro dr too. Would the GP be able to run blood test and find out that way. I need gluten free food but dont know where to start and what to eat right away, i quess i have to find a grocery store that sells gluten free products. totally lost!!!!!!!!! Please what foods should i start out with. I need to gain at least 30 ibs back. i look like a skelaton and scared. thank you

Welcome to the forum, Leiana. It does feel a bit like coming home when you start reading about people who have been going through exactly what you are going through. You think, hey, I'm not crazy. A good many of us have been through the whole gamut of false diagnoses before someone, or we ourselves, finally hit upon the idea that it is the gluten!!!

Your GP should order the full celiac panel for you, and if that should come back negative (as you have probably seen, there are many false negatives, but you may not be one), the next diagnostic test is an endoscopy where they take several biopsy samples from the small intestine. If you intend to get the official diagnosis you must keep eating gluten until the testing is complete or you will affect your results. It is even possible that the biopsy could be negative because the damage can be patchy and there is SO much small intestine. Nevertheless, these are the imperfect tests we have right now.

The other diagnostic test is to try the gluten free diet if the other tests are negative. If you respond positively this is in itself is diagnostic. But you should not run out right away and buy gluten-free substitutes for all the foods you are used to eating. Most of the food around the outside of the supermarket is naturally gluten free. Start with chicken and fish, fruits and veggies, rice; for snacks you can eat things llike almonds, rice crackers and hummus, make your own avocado dip; just eat natural unprocessed foods that are easy to digest, because your tummy may reject a lot of the other stuff right now. The rest can come later. Just get everything settled down first before you start adding in the hard to digest things like red meat, the gluten-free grains, corn; also it is best to avoid dairy because if the villi are damaged in your intestine you won't be able to digest that. Also, a lot of us find we have a problem with soy and it is best to avoid that at first. So just follow the K.I.S.S. plan at first, and then you can add other things back in one at a time every couple of days to see if you are able to handle them. The one thing you will have to do is learn to read the labels on foods and learn where gluten can hide (I even found it in marmalade!).

But if you intend to pursue the testing, that is your first step. Don't put the cart before the horse

Good luck with your appointment on Monday, and keep us informed of how you do. Ask all the questions you want. Someone will have an answer or an opinion or a suggestion.

[Leiana]

Welcome to the forum, Leiana. It does feel a bit like coming home when you start reading about people who have been going through exactly what you are going through. You think, hey, I'm not crazy. A good many of us have been through the whole gamut of false diagnoses before someone, or we ourselves, finally hit upon the idea that it is the gluten!!!

Your GP should order the full celiac panel for you, and if that should come back negative (as you have probably seen, there are many false negatives, but you may not be one), the next diagnostic test is an endoscopy where they take several biopsy samples from the small intestine. If you intend to get the official diagnosis you must keep eating gluten until the testing is complete or you will affect your results. It is even possible that the biopsy could be negative because the damage can be patchy and there is SO much small intestine. Nevertheless, these are the imperfect tests we have right now.

The other diagnostic test is to try the gluten free diet if the other tests are negative. If you respond positively this is in itself is diagnostic. But you should not run out right away and buy gluten-free substitutes for all the foods you are used to eating. Most of the food around the outside of the supermarket is naturally gluten free. Start with chicken and fish, fruits and veggies, rice; for snacks you can eat things llike almonds, rice crackers and hummus, make your own avocado dip; just eat natural unprocessed foods that are easy to digest, because your tummy may reject a lot of the other stuff right now. The rest can come later. Just get everything settled down first before you start adding in the hard to digest things like red meat, the gluten-free grains, corn; also it is best to avoid dairy because if the villi are damaged in your intestine you won't be able to digest that. Also, a lot of us find we have a problem with soy and it is best to avoid that at first. So just follow the K.I.S.S. plan at first, and then you can add other things back in one at a time every couple of days to see if you are able to handle them. The one thing you will have to do is learn to read the labels on foods and learn where gluten can hide (I even found it in marmalade!).

But if you intend to pursue the testing, that is your first step. Don't put the cart before the horse

Good luck with your appointment on Monday, and keep us informed of how you do. Ask all the questions you want. Someone will have an answer or an opinion or a suggestion.

OH Thanks for the reply. Well tommorrow is my appt and i pray it goes well. Its a new Dr. so i hope he will do a celiac panel like you suggested. also need the thyroid checked to see if that is the possible cause of weight loss. I seems that i have elimmanted most food in this world from my diet. Although you mentioned red meat and dairy which i seem to tolerate. If i eat i red meat i feel better and seems to normalize my blood sugar. or cheeese helps too. I know for sure i cannot eat wheat bread, rye, oats spicy stuff. I am still confused about the difference in being food intolerant and celiac. Does it mean you are just intolerant of certain foods and not celiac? where on this website does it explain this? there is so much to learn in such a short time. I just want to gain this weight back. Tired of watching what i eat and thinking is this going to make my intestines go crazy again.!!!!!!!!!!!! thanks again :(

[ang1e0251]

Welcome to the Forum! Sounds like you are moving in the right direction meeting your dr first. We'll see how your tests come out before giving you more diet advice. You need to be actively eating gluten for the tests to have a chance to come out positive. Even so, they might be negative.

As for the difference between intolerant and celiac disease, that is a debate as far as I can tell. Medically, it should mean that folks that are intolerant cannot eat gluten without uncomfortable symptoms but no long term damage. While folks with celiac disease experience their immune system go on the attack whenever gluten is ingested, resulting in damaged intestines and possible other organs or nerve systems in the body. However, it seems that there are folks who seem to be intolerant for years and then eventually have damage that leads to a celiac disease dx. That last part is just my opinion. In any case, the treatment is the same for intolerant as for celiac disease, the gluten free diet.

I hope you aren't too confused. It took me quite awhile reading the threads here to get a grip on the concept. celiac disease is tricky and sneaky. It's hard to understand and seems to be different for each individual person.

Good luck on your testing and let us know how it comes out.