Should I Be gluten-free?

[Jessica N.]

I have been gluten-free for 3 weeks and am becoming discouraged and wondering if despite my hope for an answer and high blood test and flattening villi, gluten-free is not the answer to my problems. I still get some bloating (not as bad as it had been in months past) and have been having lots of pressure and uncomfortableness in the lower abdominal region (I'm gathering my intestines). I just wish I could figure out if this is helping me, or a waste of energy! My DR wants to do a colonoscopy bc of my constipation issues, but I don't think a colonscopy shows anything relating to celiac. I just feel depressed about these issues never resolving and could use some support.

[ravenwoodglass]

Sorry you are still having problems. Since you had both postive blood tests and postive biopsy you do need to be gluten free. It can take some time to heal and it is not unusual to have ups and downs. What sort of things are you eating? Many of us need to give up dairy for a bit until we are healed. It also isn't uncommon for us to have CC issues that we don't realize we are having for a while. There are lots of stuff that can get us that many don't think of at first like pet food and kisses from a gluten eater, for example.

While your correct that a colonoscopy can not diagnose celiac since you are already diagnosed the doctor wants to do one to make sure nothing else is going on. The choice whether to have one, as with any test, is yours to make but if you have been super strict with the diet, lifestyle, toiletries etc it might not be a bad idea to make sure nothing else is going on.

[Jessica N.]

Sorry you are still having problems. Since you had both postive blood tests and postive biopsy you do need to be gluten free. It can take some time to heal and it is not unusual to have ups and downs. What sort of things are you eating? Many of us need to give up dairy for a bit until we are healed. It also isn't uncommon for us to have CC issues that we don't realize we are having for a while. There are lots of stuff that can get us that many don't think of at first like pet food and kisses from a gluten eater, for example.

While your correct that a colonoscopy can not diagnose celiac since you are already diagnosed the doctor wants to do one to make sure nothing else is going on. The choice whether to have one, as with any test, is yours to make but if you have been super strict with the diet, lifestyle, toiletries etc it might not be a bad idea to make sure nothing else is going on.

Thank you for your response. This message board makes me feel comfort in the fact that others are going through similar experiences (misery loves company!) LoL My biopsy came back negative for celiac (even with the flat villi!) I am going to look int toiletries this weekend, I finally am getting the food down pat and keeping all my gluten free bowls, utensils store separately and washed with a different sponge. I try not to leave them in the sink or at least keep all my dirty stuff on one side since my roommate is not gluten free. I am def going to schedule the colonoscopy, there is just too much C to not be careful and have things looked at!

[mushroom]

Thank you for your response. This message board makes me feel comfort in the fact that others are going through similar experiences (misery loves company!) LoL My biopsy came back negative for celiac (even with the flat villi!) I am going to look int toiletries this weekend, I finally am getting the food down pat and keeping all my gluten free bowls, utensils store separately and washed with a different sponge. I try not to leave them in the sink or at least keep all my dirty stuff on one side since my roommate is not gluten free. I am def going to schedule the colonoscopy, there is just too much C to not be careful and have things looked at!

If you are living with a gluten eater, it is just that much harder to avoid trace cross-contamination no matter how hard you both try. But assuming you don't want to change roommates, you are going to have to set up gluten free zones in your kitchen, IMHO, dedicated shelf (on the top) in the fridge and the pantry; dedicated gluten free counter space; never share any spreads or dips, or wooden spoons or cutting boards, and on and on....

It is usually recommended that you trial the gluten free diet for at least three months before you make any decision as to whether or not it is helping. I don't find it persuasive that you were not diagnosed celiac, with flattened villi - something caused them to self-destruct, and until they heal not a lot of proper digestion is going to take place. It is also possible that you have a leaky gut from gluten and that other foods are leaking into the blood stream in an undigested stated which can make for additional food intolerances. So if I were you I would try a mostly meat, veggies, fruit and rice diet until things settle down a bit for you. Not to say that there isn't something else going on like Crohn's or colitis, but just to suggest that you need time to heal before you can pass judgment on gluten free.

[Jessica N.]

If you are living with a gluten eater, it is just that much harder to avoid trace cross-contamination no matter how hard you both try. But assuming you don't want to change roommates, you are going to have to set up gluten free zones in your kitchen, IMHO, dedicated shelf (on the top) in the fridge and the pantry; dedicated gluten free counter space; never share any spreads or dips, or wooden spoons or cutting boards, and on and on....

It is usually recommended that you trial the gluten free diet for at least three months before you make any decision as to whether or not it is helping. I don't find it persuasive that you were not diagnosed celiac, with flattened villi - something caused them to self-destruct, and until they heal not a lot of proper digestion is going to take place. It is also possible that you have a leaky gut from gluten and that other foods are leaking into the blood stream in an undigested stated which can make for additional food intolerances. So if I were you I would try a mostly meat, veggies, fruit and rice diet until things settle down a bit for you. Not to say that there isn't something else going on like Crohn's or colitis, but just to suggest that you need time to heal before you can pass judgment on gluten free.

I have designated a cabinet for my gluten-free stuff. Just the sink can come into cross contamination...I'm working on it! As for food I have been trying to go more basic with whole foods...It is very hard with student teaching and working 4 times a week! So far this week the non-whole food items I bought were waffles, fries/hash browns (potatoes were the only ingredient), yogurt, cliff's fruit rope, bbq sauce, lara bars, protein for my protein shakes and coconut water. As I have to think about it I guess that is a lot of stuff.

As for the diagnose (or non-diagnose) I am saying the same thing! It blows my mind that the gastro's aren't more concerned or curious about what the hell is going on if it isn't celiac! I asked why they could flatten he said Crohn's, something with gluten (not celiac) and another thing I can't remember so thats why I am having the colonoscopy.