I Could Really Use Some Advice!

[thundersweet]

My name is Sandy. I am new here today. I went gluten free maybe 1 1/2 weeks ago. After the first couple days, I was happier than I have ever been in my life. I felt so good. I bragged to my family etc. Now, for the last few days, I have felt just like I used to. Is it normal to go from feeling great and seeing major improvement to having old symtoms?

My only symtoms were major irratibilty. I felt aggravated by little things. My kids....they could drive me crazy at the drop of a hat. I felt as though I could bite my familys heads off sometimes. Ok, all the time! I had no patience at all. For those few days I was feeling better, I had none of those symtoms. My kids could NOT push my buttons. I was patient and loving with them..even at bedtime. lol Bedtime is usually a struggle around here but gluten free, I could easily handle it. Even dh noticed the change.

Then, BAM! I am back to the way I used to be. Maybe even worse. What is going on? Does this mean I don't need to even bother with gluten free? Was it something else that made me feel so good? I have no idea what though if it wasn't being without gluten.

A couple of things happened that may have messed things up. After those few great days, we went to Taco Mac for lunch. I had wings and a ceaser salad. I had blue cheese to dip the wings. I realize now, the blue cheese is not gluten free. I did have less than the little cup they give you for dipping. That night as I sat on the couch with dh, I could feel the old feeling coming over me. I said to my husband, "I am starting to feel grumpy." After that, I was afraid to eat out at all. I felt bad for a day and then felt better for a day. My gluten free bread mix came in the mail and I made some. Back to feeling bad after the bread. Maybe I am intolerant of all grains, not just gluten containing grains?

Sorry this is so long. I actually feel pretty good this morning. I was feeling so bad yesterday, I went to buy some 5HTP. I did not feel any difference yesterday but feel better this am. I have no idea if that is just related to me finally coming through the gluten free "fog" or if it's the 5HTP.

Is it normal to feel good and then not? What a cruel joke. I am so obsessed with getting that feeling back. I am actually getting depressed because I didn't realize how bad I felt all these years. After feeling good and then not, I just feel desparate to find out the cause of my moodswings. Was it gluten and I am just having a temporary setback?

Thanks so much,

Sandy....I am actually scared to eat anthing now~

[RiceGuy]

It is usually not a good idea to eat at fast food places. Even if it's not supposed to have any gluten in it, contamination is so very common in those places.

Also, you might find it necessary to avoid dairy for awhile too. Many have found it more than helpful.

It is possible to react to most if not all grains, but keep in mind that you've only been gluten-free a short time. If you haven't already done so, check your skin/hair care products, makeup, dish soap, etc. Toss out wooden spoons and cutting boards. Avoid scratched pots and bowls, etc. If you toasted the gluten-free bread in the same toaster that is used for gluten filled bread, then your slices got contaminated. You'll need a dedicated gluten-free toaster. Don't let your husband kiss you after he eats gluten. Don't get near wheat flour, as you'll be inhaling some of what poofs into the air. Plus it can remain aloft for hours.

There can be ups and downs, but you'll usually know when you've ingested something you shouldn't have.

Welcome to the board!

[ShayFL]

Welcome to the world of "accidental glutenings" and "cross contamination".

Best bet: Eat at home. Simple foods: meats, pure spices, eggs, veggies, fruits, potatoes, corn, rice (plain) with your added seasonings (not seasoning packages).

[home-based-mom]

It's a fairly safe bet you were glutened at the restaurant. Something in a sauce or marinade or coating no doubt contained wheat, touched wheat or was handled by someone who touched wheat and then didn't wash their hands before they touched what you ate. Eating out is like walking blindfolded through a mine field while playing Russian Roulette with only one empty chamber.

Around the house, think of gluten as dog poop. Anything that it comes in contact with - directly or indirectly - is contaminated. If sandwiches have been made on regular bread and the knife put back into the mayo or peanut butter jar, the entire jar is contaminated. You need your own. Same for jelly, butter, anything. If people eat sandwiches or crackers or cookies or pastries or any other gluten finger food, anything they touch before washing their hands is contaminated. This means door knobs, refrigerator and microwave handles, remote control, all that stuff. It stays contaminated until cleaned off. If you open the fridge, grab a piece of cheese or some grapes and eat them, the gluten has transferred from their hands to the fridge door handle to your hands to the cheese and grapes and into you.

That's why some people have v-e-r-y inflexible rules in their "mixed" households, or else keep a gluten free home.

Welcome to the forum. It really does get easier to keep yourself safe at home. You will learn to take food with you when you go out because you cannot trust what other people make. There are many threads verifying that other people just don't "get it."

Ask anything you need to. Read as much as you can. We were all new once!

[khieken]

Hi Sandy,

I'm new to this too (about 3 weeks gluten-free), and I feel like a similar thing has happened to me. Initial improvement in mood and lethargy and my GI symptoms improved immediately, but then have had recurrences of feeling down and tired, and GI symptoms returned. I am probably having trouble with cross-contamination because dh is not gluten-free, only me and the kids. I also have not gone through the toothpaste, health and beauty stuff, etc. yet, nor have I eliminated milk products. This is all a little overwhelming. I'm also confused about this: how could just a tiny fraction of gluten be causing the same level of symptoms as the boatload of gluten I used to eat?

Keep posting and let us know if you come up with any answers.

Karen

[rmmadden]

Depending on how long you went un-diagnosed can / will determine how long before you're feeling consistently better. The damage done in the intestine doesn't heal itself overnight. For me It was the better part of 3-1/2 years before I started feeling "normal" again (which, of course, could be argued by anyone who knows me ;-).

I still have bad days after accidentally getting glutened. Someone told me early-on that you can't measure the diet day-by-day but, you must look long-term (6-month evaluations) to see any progress. The key is positive thinking, strict diet adherence and, most of all, patience.

Hang in there!

Cleveland Bob

[thundersweet]

Thanks guys! I don't think I am celiac. I think I am just very intolerant. Like I said, my only symptoms are mood related. I am a real pain in the arse to my family! I get irritated way to easily and I hate that about myself. When I am off gluten and not being contaminated, I am much better. Plus, that can only be a bonus for my weight loss. I lost almost 40 pounds doing low carb but I was including low carb breads and such. I have all but stopped loosing so with the addition of taking out all grains, it should help boost the weight loss. I plan to do the Enterolab test when I get back home from vacation to see if I am truly intolerant. I have already sent poop samples to them for my kids. Can't wait to see what they come up with.

Thanks so much and keep the advice coming if you have anything more to add! I really appreciate it!

Sandy

[mftnchn]

Many people reports ups and downs in the healing process. Quite often is it connected to accidental gluten, but I think not always. Many of us notice increased sensitivities as part of the healing process. Perhaps getting off gluten uncovers this problem.

I now realize that GFCFSF plus avoiding a few allergens was not adequate for me. The intestinal damage I incurred caused me to not be able to digest any carbs that have to be broken down. I am now doing much better on a further restricted diet.

Unfortunately, there isn't a one size fits all. That's why this forum is so helpful for sharing different things that work.

Hope you are better soon, I think you are on the right track.

[ravenwoodglass]

Thanks guys! I don't think I am celiac. I think I am just very intolerant. Like I said, my only symptoms are mood related. I am a real pain in the arse to my family! I get irritated way to easily and I hate that about myself. When I am off gluten and not being contaminated, I am much better. Plus, that can only be a bonus for my weight loss. I lost almost 40 pounds doing low carb but I was including low carb breads and such. I have all but stopped loosing so with the addition of taking out all grains, it should help boost the weight loss. I plan to do the Enterolab test when I get back home from vacation to see if I am truly intolerant. I have already sent poop samples to them for my kids. Can't wait to see what they come up with.

Thanks so much and keep the advice coming if you have anything more to add! I really appreciate it!

Sandy

Celiac is much more than just a GI disease. For some it can have a very strong neuro component that shows for years before the GI stuff seems like anything more than an annoyance. During this time the antibodies are coursing through your blood and into all your other organs. For some this will attack the joints and muscles, some the gallbladder, some the liver, some will get heart inflammation, some will only have skin effects (DH). Celiac is very much a spectrum disorder and for some the villi destruction that is considered the 'proof' of a celiac diagnosis is one of the last things to show up.

People that have strong neuro effects need to be just as strict as those with full villi destruction. At times we need to be even more strict as many of us will react to distilled gluten grains. Whether you are 'just intolerant' or a full blown end stage celiac the diet needs to be just as strict and the damage to your body can be equally severe.

[Juliebove]

One thought. If you used an old bread pan/maker that was used prior for making a gluten containing bread, you could have gotten gluten that way. You need to buy a new one or give the one you have a thorough cleaning. Some here would say to toss it and just buy a new one. I take no chances any more. Either I line the pan with foil (depending on what I am baking) or I use a throw away foil pan.

[roxana]

My name is Sandy. I am new here today. I went gluten free maybe 1 1/2 weeks ago. After the first couple days, I was happier than I have ever been in my life. I felt so good. I bragged to my family etc. Now, for the last few days, I have felt just like I used to. Is it normal to go from feeling great and seeing major improvement to having old symtoms?

My only symtoms were major irratibilty. I felt aggravated by little things. My kids....they could drive me crazy at the drop of a hat. I felt as though I could bite my familys heads off sometimes. Ok, all the time! I had no patience at all. For those few days I was feeling better, I had none of those symtoms. My kids could NOT push my buttons. I was patient and loving with them..even at bedtime. lol Bedtime is usually a struggle around here but gluten free, I could easily handle it. Even dh noticed the change.

Then, BAM! I am back to the way I used to be. Maybe even worse. What is going on? Does this mean I don't need to even bother with gluten free? Was it something else that made me feel so good? I have no idea what though if it wasn't being without gluten.

A couple of things happened that may have messed things up. After those few great days, we went to Taco Mac for lunch. I had wings and a ceaser salad. I had blue cheese to dip the wings. I realize now, the blue cheese is not gluten free. I did have less than the little cup they give you for dipping. That night as I sat on the couch with dh, I could feel the old feeling coming over me. I said to my husband, "I am starting to feel grumpy." After that, I was afraid to eat out at all. I felt bad for a day and then felt better for a day. My gluten free bread mix came in the mail and I made some. Back to feeling bad after the bread. Maybe I am intolerant of all grains, not just gluten containing grains?

Sorry this is so long. I actually feel pretty good this morning. I was feeling so bad yesterday, I went to buy some 5HTP. I did not feel any difference yesterday but feel better this am. I have no idea if that is just related to me finally coming through the gluten free "fog" or if it's the 5HTP.

Is it normal to feel good and then not? What a cruel joke. I am so obsessed with getting that feeling back. I am actually getting depressed because I didn't realize how bad I felt all these years. After feeling good and then not, I just feel desparate to find out the cause of my moodswings. Was it gluten and I am just having a temporary setback?

Thanks so much,

Sandy....I am actually scared to eat anthing now~

to Thundersweet:

Dear Sandy, I went through the same thing that you are going through right now. My simptoms were not the ''classical"' ones ( vomiting, diarheea, weight loss) but just a huge anaemia that got me into hospital ( was close to a blood transfusion).

After starting the gluten-free diet I felt even worse than with the gluten: drowsiness, dizziness, huge irritability, fatigue, everything i ate made me bloated, couldn't eat fruit and vegetables. I was so tired that I felt like I did farmer's work after only two hours after I woke up in the morning. Couldn't sleep at nights cause of anxiety that made me have migraines. Got mad at everyone and everything that lived too, treated my own mom horribly . So as you see it can be worse. But you gotta BELIEVE in you and your inner-strenght, the mind does wonders. In 3 months of gluten-free diet and eating JUST : boiled rice or potatoes, boiled or grilled meat, boiled vegetables never raw, no milk for a month, cheese, boiled eggs ( preferably only the yolk ), no fruits or fried food, no butter or fats; after this diet I started feeling happier, better, full of desire to live.

My advice to you, if I may, is to stop eating at fast foods ( I know Americans are really keen on fast food but it's the most destructive thing for the human body), eat only food that is naturally organically grown and prepared by your own hands so you KNOW for sure that it does not contain gluten or traces of gluten. Don't eat ice cream, juices, yoghurts that you're not 100% sure that are gluten-free.

I've stayed in Italy for 2 months and I recommed the Italian cuisine and mediterranean diet to everyone! ( course for us celiacs replacing the wheat with gluten-free cereals). It is the healthiest cuisin that I ever tasted. If you want I can help you with some recipes.

But the biggest help that you can recceive is from YOURSELF. The gluten-free diet changed my life and my way of eating, thinking, living. It has made me a new person. And to think that gluten-free is such a healthy way of living, there's nothing nutritional in wheat so there's nothing to lose. The cravings you can learn to control. When I started I got such a strong craving when I saw a yummy wheat cake or biscuits or pizza that it made me have headaches. but now it's all gone, if I get the munchies for something sweet I prepare myself a pineapple tart with gluten-free flour

Regarding the quantity of gluten you can eat my doctor told me that every body's reaction is different. For ex. there are celiacs who sick to vomiting after eating a very small quantity of gluten and there are others who can eat a whole plate of wheat pastas and have nothing! So you have to do a lot of experiments on yourself till you know what is good for you and what not. even from the ''allowed'' foods. So arm yourself with a lot of patience and don't dispair.

Take care of yourself,

Roxana from Romania.