MChase

New to gluten free also.  I am scared of most things.  I make my own salad dressings.  I also make my own seasoning mixes by using gluten free single spices.   I do not ingest anything that I do not know is gluten free.  I've only been out to restaurants a couple of times since going gluten free and I question the servers like crazy.  Better safe than sorry.  

No it's not silly.  I love gift baskets/towers.  Last year my inlaws sent us  gift box that was filled with meats, cheese, crackers.  I was hoping they wouldn't do that this year since I cannot eat an of it.  We did receive a beautiful gift tower from them this year.  Not only was it beautiful, but they were so thoughtful in the one they picked out.  It included several different types of pears, oranges, and apples.  It also had nuts, hard cheese, smoked salmon.  There were a few items I couldn't eat (biscotti, chocolates, and crackers).  It was so thoughtful of them to think about my food issues (especially since I am new to being gluten free).  

congratulations to you!  and happy b-day (ya look great btdubs   )

 

people need to get over what we are or are not eating!! 

Thank you

Thanks guys.  It was a success.  I was so worried about going out for the first time.  I was worried not being able to "stand my ground".  But since this is not a diet, but a must for health reasons, I had no choice.  At first, I felt a little bad, but got over it quickly.  Why do we think we need to feel bad about making sure we do not ingest "poison"?  And in my mind, that is how I liken gluten to.  It is poison and why would I want to ingest poison just to make someone else feel good about themselves?  As I have read elsewhere, if I was allergic to peanuts, would they insist that I try their PB&J?  Or if I was allergic to bees, would they insist that I start a bee colony? 

I just felt great that I put myself and my health first.  I was in control.  I am in control of what goes in my body.  It is a huge weight lifted now that the first gathering is out of the way.  Next, I have to conquer going to an upcoming banquet.  I am in the process of contacting everyone about my "dietary needs".  I contacted the head of the banquet, they referred me to the head caterer, which in turn told me that I cannot request any changes or a special plate , but have to contact the head of the banquet who must then contact the head caterer. (Not sure why we gotta go in circles, but hoping we can get it sorted out).  

And thanks everyone for the birthday wishes!

Yeah!

 

Sounds like Bonefish grill?  We like that place.

Yes, it was Bonefish Grill.  I have never been there before.  The food was delcious.

I went out with friends for the first time since being gluten-free.  I've only been gluten-free for 10 weeks.  It was my 40th birthday on Friday and my friend's 40th on Saturday.  She invited my husband and I out to celebrate our birthdays (she picked the restaurant).  I checked out their menu online (they had a gluten-free menu).  Once we were seated at the restaurant (before drinks were ordered), I made sure to ask about their gluten free menu (I also asked if anyone else needed an allergy menu).  She and her husband ordered an appetizer that was definitely not gluten-free and when her husband kept insisting I try it.  I kept telling him that "although it looks delicious and wished I could I, I cannot eat it".  He kept persisting.  So, I ended up saying "are you going to hold my hair while I'm puking all night?" Another guest said "eww, let's not talk about that while eating"...  I said "well, if I have any gluten, I will be in the bathroom all night and will be sick for a long time from it".  He didn't ask again.  When it came to order our dinner, I asked the waiter lots of questions  about their gluten free menu, including the exact ingredients of the sauce that they use.  I did apologize to the waiter for asking lots of questions but let him know it was necessary.  He was very friendly.  

There were some small convos about outgrowing allergies (tried to briefly explain this is not an allergy), how easy it really must be to do gluten-free because there are so many packaged gluten-free products now (explained that yes there are, but they are very expensive and with other food allergies and intolerances I am best to stick with non-packaged foods and make everything homemade). I also let them know that it is all or nothing (ie cutting out some gluten doesn't work for those with Celiac or gluten intolerance).

Then it was dessert time.  I was so full from my salmon, jasmine rice and spaghetti squash that I declined dessert.  But that didn't stop them from insisting that I took a bite of theirs just to taste it.  So, I just politely told them again, "It looks so delicious, but I don't want to ruin our night by getting sick".  We were heading to a bar afterwards to meet up some more friends.

So all in all... I DID IT!!!  I went to my first outing with friends since going gluten-free.  Yes, I felt a bit "picky" but I stood my ground (politely) and didn't get sick!!!  I even had a few drinks at the bar (gluten-free of course).  This is the first time in my life that I have gone out and not been some degree of sick.  

Yay me!  

I've had night sweats since I can remember (earliest age I remember is being around 6 or 7). They were so bad, I ended up keeping my bedroom really cold so that it wouldn't be so bad.  I have had boyfriends in the past tell me that in the middle of the night, my skin feels like it is on fire.  I have been to several Drs about it... hormones are okay, allergist said it isn't from allergies.  I've been gluten free for approximately 10 weeks and they are gone.   I also suffered from waking up with a swollen tongue.  That is gone too.

I've been gluten free for about 9 weeks now.  Although  I have my ups and downs (emotional) about being gluten free, it has greatly helped my health.  I also have found out (by keeping a food journal) that I cannot have dairy and eggs, raw onions, any red onions, garlic powder (small amounts of fresh garlic is okay), ground ginger, bananas, mushrooms.  Over Christmas, my mom and I were talking about food issues.  She informs me that when I was little, lots of foods bothered me.  She said that if I ate eggs more than once a week, I would be extremely sick.  She also said when I was really little and then again when I was pre-teen, that I was diagnosed with lactose intolerance.  I do remember that as I got older I didn't eat eggs much (don't like the taste) , the same with milk.  I also remember when I was little, one dr told her to put chocolate in my milk to get me to drink milk since I refused it.  I also remember being little (5-8), every time I visited my grandmother, I was so sick, that I couldn't get out of bed (she forced us to eat foods even if we didn't like them).  I also remember as a teen, I hardly ate lunch at school because I didn't want any embarrassing symptoms to pop up.  

As an adult, I have been in the hospital many times for pelvic pain, stomach aches, etc.  Usually I get told I have food poisoning (even if other people ate the food that I did), once I was told I was allergic to shrimp (went years without eating shrimp) and some other things.  Over the past 20 years, I have had several ultrasounds (incl transvaginal), ct scans, dye tests, laproscopies (4), and surgeries.  Plus countless of medical problems.  

I guess I really don't have a question, just venting a little.  If I have always had problems when I was a kid, why did my mom not think it was important to inform me of these food problems when I became an adult?  I will be 40 next week.  What would my life have been if I was able to find out these issues earlier in my life?  The good thing is that I am finally figuring it out.  

For me, I think I have always had food intolerances, but didn't realize which foods were problems.  I just knew that almost anything I ate seemed to cause problems.  Once I started keeping a food journal, I have found which foods causes which reactions.  Gluten definitely is a problem for me.  But I also found out that eggs, dairy and soy (can have soy in very small amounts).  I also have issues with mushrooms and bananas (for over 10 years ago).  

Good luck.

I am new to gluten-free (6 weeks).  I definitely know gluten and my body do not agree with each other (among other foods).  My question is, how to do you politely let people know not to get you any gluten containing presents?  My brother and sil always gets us a cute Holiday themed gift package (ie. gingerbread house, snowmen coffee mugs with hot chocolate and cookies, smores kit, bbq set, etc).  I don't want to sound rude or ungrateful, plus I don't want them to waste money on a present that we cannot use.  

On a positive note, my mom did ask me to make a list of all the safe candy, treats, etc that we can have.  (even though, she followed up with asking "Are you sure you can't have gluten"?  And I made it clear to her that although, my husband and son do not have to eat gluten free, there is no gluten allowed in my house.

Thanks!  

*Gluten Intolerant

*Egg Intolerant

*Lactose (or Casein, not sure which one) Intolerant

*Mushroom, Banana, Onion Intolerant

*Wheat Allergy

Six weeks is not very long, so you're probably still healing. It's sometimes not a bad idea to drop dairy for a while since it's hard to digest, but unless you're getting worse or having weird symptoms you didn't before, then it's likely just part of the healing process. Be sure to double check your kitchen and food for any lingering gluten.

 

Give yourself a few months at least before worrying about other intolerances. By then you should have mostly healed up, and if something else is wrong then you'll likely feel it.

For future reference though, dairy (lactose and/or casein). soy, corn, nightshades, eggs, etc, seem to be common intoleranes.

 

A digestive enzyme and/or probiotics might help with gas/indigestion.

 

Good luck!

Pegleg, 

How do you know whether it is lactose intolerant or casein intolerant?

I'm new to Gluten Free too (5 weeks).  I started keeping a food diary (using an app on my phone where I can put in food, medication, symptoms).  I know it takes awhile for things to get better when you go gluten free.  But I noticed  other symptoms were popping up.  I then realized eggs were the culprit.  So I started eating them different ways every 3 or 4 days (scrambled with milk, easy over, hard fried, omelet, even tried in baked goods, just egg whites, just egg yolks).  Every time I ingested any eggs whatsoever, I would have issues within 15 minutes that lasted anywhere from several hours to a day and half (depending on how much eggs I consumed).  I also have issues with dairy.  Digestive wise, I can have some dairy if I take Lactaid, but it causes headaches and sinus issues regardless of how much Lactaid.  I know I didn't realize all the foods that I am intolerant to until going gluten free.  I think because I was always in pain (digestive wise) that I never pinpointed what the culprit was.  I now realize what pains (and other symptoms) are associated to what food. I am sure there are plenty of food that I have realized that I have an intolerance to.  Good luck to you.

So far I can't have gluten, wheat (allergic according to a prick test), bananas, eggs, dairy, mushrooms, raw onions, any red onions, garlic powder (fresh garlic seems okay if I use it sparingly).  I also break out if I touch pineapples and ginger (so I try not to ingest those.)  I am also beginning to believe I have issues with white potatoes.  Its a long road.  

**  For me, I didn't want to do a shared household.  At least not at first.  I didn't want to accidentally get glutened.  So, everyone in the household is  gluten free at home.  What they do on their own time outside of the house, is fine.  They must wash their hands when they get home, so they do not get "gluten" on the fridge, cabinets, packages of food, pantry door, etc.  Even with a teenager, no one has complained.  I just make sure I have gluten free snack foods for him (gluten-free yogurt, bananas, apples, fritos, cheese, nuts, etc).  

Thank you guys.  I just didn't think one little thing could cause such a bad reaction.  My stomach/intestines is still in turmoil and now my bones and joints hurt so badly.  I could barely get out of bed.  Who would have thought?  Has this been my problem since I was a kid? 

The waffle maker is now back in the box in the closet (in another room).  I boxed everything up to give away to a friend who is going through a divorce and needs everything.  Need to set up a time to give it to her so I can get it out of my house.  

I'm dreading Thanksgiving not knowing what I can and cannot eat.  The only positive thing is is that I always host and do all the cooking (except for a few desserts that my Mom usually brings).  Is it wrong that I am hoping that no one comes for Thanksgiving? (My ex-husband might get our son even though it is not his Thanksgiving year), my mom might have to work (she works in retail and the company she works for is open on Thanksgiving this year), etc.  I am just waiting to hear from everyone.  Just trying to shop for "gluten free" stuff seems overwhelming.  Most of the turkeys at our local store has broth or other things in it that I am not sure is gluten-free.  The only one I can find that is "natural" is twice the cost.  Sorry, if I am off topic. 

Thanks again everyone!!

I am new to the gluten-free life and do not have an official DX (my pcp sent me to a GI to be tested for Celiac, he did not do a blood test and only took 1 biopsy of the small intestine which he stated was negative).  I decided to go gluten-free against his advice.  Been gluten-free for 3 weeks (cleaned out the kitchen of all gluten food, plastic/wood (utensils, cutting boards, dishes, cups, etc), toaster, waffle maker, blender, etc.  Started feeling a little better by day 2 or 3.  I'm sleeping without medicine, I only wake up 1-2 times a night instead of 6-7.  I am going to the bathroom less (and they are more solid), no blood in the toilet, no mucus.  My psorasis is healing up.  The dark circles under my eyes are disappearing some (have had them since I was a kid). My legs don't hurt as much (quit taking arthritis medicine).  And of course, stomach pains, intestinal pains, pelvic pains are a lot milder or non existent on most days.

So, yesterday we went to a wedding.  I did have some plain coffee with a little sugar in it.  And did eat a 4 strawberries off the buffet (each strawberry had their own long stick in them, so I figured it was safe).  A little later, just a very small stomache, no trips to the bathroom or anything, so I figured maybe it was some else. Last night, I got the waffle maker out of the box in the closeand and scrubbed it.  I scrubbed it today with a toothbrush and vinegar to loosen up anything stuck on it.  I washed it repeatedly.  I spent hours cleaning it. I was making bacon, eggs (for husband and son, because after keeping a food journal, I realized the other day I cannot tolerate eggs), gluten-free Vegan Waffle (I received a mix in a gluten-free subscription box).  I was making the waffles for them because I don't much like them.  Stupid on my part not thinking about what I would eat (because not eating eggs is new to me now).  So, I was making the waffles.   So out of habit, I automatically picked up a waffle to try it.  It was probably no bigger than 4 or 5" in diameter.  Stupid!  So, after about 20 minutes, my stomach was in turmoil.  I had to run to the bathroom and spent hours off on in there.  I had backache, stomachache, bloating so much I feel like I'm going to rip open, intestinal discomfort, pelvic cramps, headache, sweating. This went on for about 2-2 1/2 hours.  Now it's been about 4 hours later.  I have  big knot in my stomach, intestinal and stomach contractions, my skin looks pale and pasty, my dark circles are back with a vengence, my psorasis itches like crazy.

So after all that info.  My question is:  Can cross contamination cause this much distress?  or could it be something else?  I honestly figured since I don't have an official DX, then I didn't have to be as vigilant.  Stupid! I am beating myself up about this.  I am frustrated and overwhelmed as to what I cannot eat (no gluten, no eggs, no bananas, no mushrooms, no peanut butter, little to no dairy) and what I can eat.  I am almost afraid to eat anything.

Very new to the gluten-free lifestyle (2 1/2 weeks).  When I told my mom, she said , "Oh, so you just need to eat better". My mom also thinks that I have gluten issues because of all my crazy diets over the years, which I am not sure what she is talking about.

And then tonight, talking to a friend online, known him for about 6 years, he said "Oh so you just have to cut out carbs".  So I tried to explain gluten is from wheat, barley and rye and is in lots of things including bread, but also in a lot of  like salad dressings, chicken broth , etc.  His response was "No bread.  That's going to be tough.  Good for you. I gotta clean my diet up too".  I am not doing this for a "diet" or for fun or for a fad, I'm doing this because I don't have an alternative.  

I also had another friend ask what Celiac was , his wife interrupted and stated it is an allergy to gluten.  He asked what gluten was, she said it's in wheat, so she can't have bread and doughnuts and stuff like that.  I tried to explain to them a little more and her response was, "Yay I try to eat healthy too" and then proceeded to tell her husband that she wanted Arby's for dinner because they had Taco Bell the night before and then Wendys for lunch.  

I am new at this and it is frustrating at times.  I understand that most don't get what gluten is or how it is in almost everything.  But, if you ask and I tell you, then please have the courtesy to listen to what I say.  

Been wanting to try them, but a bit uneasy about not being able to see the colors in person.

Thanks guys.  Right now I don't miss anything. Right now, the thoughts of most foods turn my stomach.  I cannot pass the bread aisle at the store without getting nauseous, the smell of the yeast is overwhelming to me.   I am still having a few issues.  I think maybe eggs are a problem.  I never was a big egg eater.  But I have been consuming them more lately.  The first week, it didn't seem to bother me, but the last two times I had eggs, I've spent a great deal in the bathroom.  Nothing compared to when I eat gluten.  

As a teen, I was dx with lactose intolerance.  I do not consume much dairy because I just don't much like it (don't like milk, don't like ice cream, not big on cheese, etc.).  I do use dairy in mashed potatoes and have been taking lactaid when I use any dairy at all.  It seems to help.  Again, consuming dairy isn't nearly as bad as consuming gluten.  

As far as the family goes, in the house is strictly gluten free.  No gluten is allowed since I am new to this and worry about cross contamination and grabbing the wrong thing by accident.  I haven't been making 2 different meals, I was just curious as to if I needed to do a complete elimination diet (and if that is the case, didn't want them to suffer too much with being so strict) to see what else is causing digestive issues.  I already know I cannot eat bananas, mushrooms, msg, raw onions, and peanut butter.  All those causes intense pain for hours and then sore for days.  At this point, I am afraid to eat almost anything.  I guess I need to start keeping a food diary and not rely on my memory as to what I eat that causes discomfort.  

Thanks again guys.  

What is bad, I don't like nuts so like trail mix is out.  I have to watch starch and sugars (pre-diabetic).  So it is overwhelming on some days.  I am so glad I found this forum!!

New to Gluten Free.  I am eating everything homemade.  Should I cut out anything else other than gluten?

Beans? Corn? Nightshades? Rice?  Dairy (when I eat dairy, I take lactaid), soy?  Is cutting out gluten good enough? or should I be more restrictive at first and add things back gradually?  Right now, it seems like I am spending all my time at the grocery store and cooking.  We've been eating  a lot of chili (all new gluten free spices), bean soup, tacos (homemade taco seasoning), fish and rice and veggies, rotisserie chicken with mashed potatoes and veggies, salad with homemade dressing.  If I do become more restrictive, how long do I need to do that for?  Plus, with a teenage son at home, what are some restrictive ideas without having to cook 2 or 3 different meals?

Thanks in advance for any and all help.

I am new to gluten-free (2 1/2 weeks at it now).  I have things coming up (not just the holidays that are stressing me out).  

We have a wedding this weekend.  I can turn down cake, but what if there is a buffet at the reception? The last wedding we went to , we were there for over 9 hours.  I can't really pack a dinner and put it in my purse.

In December, we have a get together at a bar.  Supposed to meet up at 8pm there and the band starts at 11pm.  I rarely drink (only a few times a year), but when I do , I always have bread or something to help with the alcohol.   I am planning on eating before we go.  But what is safe to get at a bar?  Drinks?  Any food? What can I throw in my purse for a snack?

Then in January, we will have a Banquet.  Last year, it was held at a seafood restaurant.  It was a buffet with foods like salad, rolls, potatoes, fried fish, breaded chicken, pie, etc.  Last year the banquet/award ceremony was from around 5pm-12am (and it was about 45-1 hour away so making dinner beforehand and eating and trying to get ready, etc would be difficult).

I know most people say don't eat out for the first 6 months of going gluten free.  But I can't be a hermit for 6 months.  Not sure what to do.  I am starting to get very anxious (which makes me extremely sick).  

Help!!  

Toaster oven could be contaminating her food.  Plus, what is she eating at school?  Are you packing her lunches?  Is she trading part of her lunch?, eating snacks, cookies, etc at school?

New to gluten-free myself, but after reading lots of information, the following could be contaminating her food:  Cutting boards (plastic and wooden), wooden and plastic utensils and containers, toaster, toaster oven, any non stick cookware (if it has any minute scratches, gluten can be hiding in it), blender, food processor, bread maker, cast iron skillets, colanders/strainers.   Plus, if you wash a dish that has had gluten on it and then wash her dish, the sponge/dishcloth can harbor gluten.  I cleaned out my kitchen and am running on the bare necessities until I can afford to buy more things (Dollar stores have been a life saver).  

Check all medications/vitamins/supplements.  I made the mistake a week ago and took some medicine and couldn't figure out why I had intestinal issues.  I took it again today and sure enough, had major issues.  I looked at the back and found "sodium starch gycolate".  I looked it up and it can be derived from wheat.   

Just because a food doesn't say "wheat, barley, rye, etc" does not mean it does not contain gluten.  Modified food starch, artificial or natural flavoring and a bunch of other ingredients can contain gluten.  Make sure you check all condiments too.  

Are there any pets in the house?  Where is their food kept?  Is she feeding them?  Most pet food contain gluten.  

I'm sorry your babies are going through this.  As an adult, this seems overwhelming, I cannot imagine having my child/children with such bad reactions.  Good luck to you and your family.  

Glad you have a "sort of" answer.  I have not been tested (PCP sent me to GI to get tested, GI didn't test for Celiac), but have started a complete gluten free diet almost 2 weeks ago.  Most days I feel tons better, I can fall asleep, my psorasis (past 7 years) is clearing up, digestive issues almost gone, etc.

To the person that stated a diagnosis would be nice, I know what you mean.  My husband stated the other day that "You don't have it that bad", this is the not the first time he has said this.  When I asked what he meant, he said that he doesn't think I have it that bad.  I told him that I don't discuss my bathroom issues with him, so therefore he couldn't know how "bad" I actually have something.  I guess because I am not screaming in pain daily, he thinks it's no big deal.  I do get episodes where I am in excrutiating pain (like labor pains) for 6-10 hours with diarrhea, back pain, vomiting, etc ever 2-3 months (not counting the daily cramps, bathroom trips, etc).  A diagnosis would be nice, so I can have proof that it isn't all in my head. 

Well - i wasn't happy when doc told me DD did not test positive on biopsy after positive blood test.  I asked for copy of path report, and I am really questioning the fact he took only 4 samples and he didn't give me all the results!

 

2 from Duodenum - which were negative. One from bulb area

One from stomach, showing mild chronic gastritis (which he did not tell me about)

One from esophagus showing squamous mucosa with chronic inflammation and rare eosinphils (again did not tell me)

 

I am stuck with this ped GI, so I can't switch.  We are already gluten-free as of Sunday and we will look for improvement.  Just wondering if gastritis and/or the inflammation can be from Celiac?

 

thanks

From everything I read, you need to have 4-7 samples from your small intestine.  I am in a similair situation.  My PCP said I had either Celiac or Ulcerative Colitis and sent me to the GI for testing for both of these.  The GI did not do any blood tests but opted to do a colonoscopy and EGD.  When the nurse called with the results, she said the Dr took essentially 7 biopsies (1 from esophagus, 1 from stomach, 1 from left side of intestine, 1 from right side of intestine, 1 from small intestine) to my calculations, that is only 5 but only 1 from small intestine. He said I had gastritis and excessive acid in my stomach.  I feel like I wasn't even tested for Celiac .  He put me on Prilosec and told me to come back in 3 months.  I started gluten free on Saturday and already my intestines feel better.  

Good luck to you.

I just received my results back from my endoscopy and colonoscopy. Everything was negative. When I asked how many biopsies the Dr took, the receptionist said 7 (but only 1 in the small intestine). He did not do a blood test prior to the procedures. My PCP who referred me specifically said to test for Celiac. My instructions from the GI office is to continue Prilosec (which was giving to me Oct 3) and take Immodium and return in 3 months. I feel like the last 2 months have been wasted and no telling how much $$.

My choices are

1. Go back to my PCP and ask for a celiac panel. Dr visit: $100+ costs of blood tests (my annual blood tests run $125-200, so no telling how much a panel will cost).

2. Follow the GI instructions and be in pain for 3 more months and then pay $150 to see him again.

3. Go to another GI, which who knows how much that will be. Probaly $150-225 for office visit. Plus tests costs. My endoscopy/ colonoscopy was $1000 (hospital fee)+ dr fee+anesthia fee (haven't received bills yet).

4. Go gluten free and see how I feel.

Since the end of August to now, we have/will spend about $2500-3000 for my digestive issues and really didn't testing done that needed to be done. With our high deductible, this is all out of the pocket.

Crohns, Ulcerative Colitis, Cancer, Bacteria, etc has been ruled out. But now I'm wondering if that is bogus too since he ruled out Celiac.

The reasons I wanted a dx was so I know how careful I need to be, whether or not to get my son tested, and to have "proof" that im not crazy..

These sound exactly like my a lot of my symptoms. Im in the process of trying to get diagnosed. I can't wait until testing is over so I can get some relief.

I guess my question is. . Do I have to eat gluten every day for blood tests since I have not yet gone gluen free? Can I skip a few days of gluten and still have accurate blood tests?

And how do you get family on board with a gluten free lifestyle? When I talk about gluten free foods, husband looks for gluten free replacements (poptarts, waffles, bread, etc). I keep telling him gluten free does not mean healthy. He also keeps reminding me that gluten free food is more expensive and we cannot afford to replace kitchenware. He says we'll do it a little at a time. But I'm worried about cross contamination. As far as expense goes, I'm spending about $200 a month(out of pocket) on Rx , not counting otc medicine and dr visits and antibiotics (several times a year). I quit taking some of my meds because ofbthe expense. If took everything im supposed to it would be $350-400 a month.