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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
5/9/14 10:41 A

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Ugh I somewhere blew it last night and went to bed so sick feeling. I really label watched and the only two things I can detect in hindsight is the 2% milk that was used in the pancake mix (1cup) or the new supposed gluten free allergy free enjoy life brand chocolate cookies. That claim all allergy free of no wheat soy nuts etc... But in the ingredients it states light buckwheat, Is Buckwheat the same as regular wheat?

I made my own pancake mix following a recipe in better homes and garden book just used organic gluten free brown rice flour instead of all purpose. But instead of almond milk I used the kids 2% milk and vinegar to make "sourmilk" like I usually do when out of buttermilk..I think that may be what killed me. I was ill nearly 10 minutes after and couldn't even eat dinner last night. Could 1 cup of milk split between 12 pancakes I ate 3 be the culprit or is it the buck wheat in the cookies?

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HEALTHYBARB1's Photo HEALTHYBARB1 SparkPoints: (128,493)
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5/8/14 4:47 P

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My family loves chocolate cake & frosting so we use the recipe on the Hersheys baking cocoa can from the store and substitute pamela's gluten free flour blend for the flour, vanilla almond milk for the dairy and add an extra egg to deal with the decrease in gluten. This cake and the frosting recipe work great and taste delicious! I also use Pamela's gluten free pancake and baking mix for my waffles and pancakes. I substitute almond milk with a tablespoon of lemon to make my own buttermilk substitution and separate the eggs and beat and add and fold the egg whites in at the end for fluffier waffles. I particularly like blueberry pancakes and the pamela's pancake mix with added fruit is quite yummy. Glad you are doing well with your food options. Smiles Barb

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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
5/7/14 11:37 A

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I enjoyed my first gluten free pizza last night. made with spinach, mushrooms, and olives and marinara. I'm not missing really anything these days. As I was really quite gluten free dairy free before. I can look back at my food journals and all of my flares coincide with eating out and huge gluten and fattening meals which is why I initially thought it was my gallbladder

I feel great. Also a nice side note my normal womanly time did not result in the usual 5 lb weight gain and massive bloating (also tom was linked to huge carb binges) Because the pain I feel is so intense when I eat wheat or gluten. OR drink dairy that I just snacked on loads of fruit and veggies instead.

Of course still learning on what is safe and what is not. Grocery shopping does take a LONG time now. But im sure I will get quicker as I find my favorites. Anyone have a nice favorite cake recipe (daughter's birthday is Sat) also looking for a decent waffle (I LOVE PANCAKES AND WAFFLES)

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5/6/14 3:34 P

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Enjoyed reading from the beginning of your journey what has happened in your 1st month of gluten/dairy free eating. Glad you are feeling better and that your DH is supportive and looking for options to help you. I laughed at your concern about family because 6 years ago when I began this journey it felt overwhelming having a family get together. It was a slow process but everyone has adjusted. We now have most everything at our table for holiday dinner for 14 and meals need to be gluten free and some dairy free and vegan too and we added in a soy allergy as well to the mix. My sister in law even made me gluten free cookies for Christmas last year.
It is definitely an adventure you are on with the gluten free and dairy free journey. Not sure where you live but there are lots of restaurants starting to offer gluten free menus and I always travel with my bag of goodies.. taking along gluten free back up snacks and pasta, bread, baked goods and oats or granola have helped me out. I also call ahead and talk to family members or restaurants to check what options I have.
Are there any specific foods that you are missing? Lots of sparkers have shared recipes and brands that they have bought for me to try and it has been most helpful. Enjoy the journey and the feeling healthy!
Smiles Barb

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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
5/2/14 2:26 P

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to bad we don't have "like" button capabilities like on facebook. Because that would be awesome. I agree. I hate labeling. Have and awesome weekend

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LILY_SPARK's Photo LILY_SPARK SparkPoints: (103,826)
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5/2/14 10:39 A

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I'm glad you got it anyway! It helps, I think, with the process.

I don't think that you need to call yourself anything, Celiac, Mexican, gluten intolerant or Polish! Just knowing that certain things make you feel better (by avoiding) works.



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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
5/2/14 10:21 A

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I did for go in for the blood test. I had only been gf/df for approx. 30 hrs before and the test results came back negative today. Which is basically what my Dr said they would do. lol. He says NOT to think just because they are negative means I don't have Celiac or a gluten allergy. He says nearly every single patient he has seen, Some with Celiac and some without have received a negative result on the blood panel. He feels the Gold standard is going Gluten free and Dairy free for a period of time. He said I should feel a difference within 30 days (which I do) and that if I don't he has ordered and endoscopy to see what is going on inside. He also has said that he has seen celiac patients actually receive false endoscopy results as well. although not as often

I feel much better gf/df for 10days or whatever. I went out last night and tried to eat a scoop of ice cream which turned my gut in 20 minutes and left me sick and miserable all night. SO Im thinking dairy is definitely a no.. and after an accidental meal containing gluten (didn't know until after I was sick and researched online) I know that's a no. Im ok with it all and am just moving forward now.

Thank you all for your help and guidance.

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LILY_SPARK's Photo LILY_SPARK SparkPoints: (103,826)
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5/2/14 9:17 A

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I'm adding to the group saying get the blood test -- I don't care if you get a false negative but you WILL GET ONE if you're not eating gluten daily for 2 weeks before getting the blood test.

Why not use SCIENCE when you can?

Even if it comes back negative, then fine. Go gluten free anyway! A 30 days test is nice but in reality, it takes many weeks and months to heal from gluten. So, first: use science that's available. Second, definitely try it but realise you must be 100% gf and that means you'd better not eat out ANYWHERE because cross-contamination is rampant.

I've been cross-contaminated at EVERY place that offers a gf menu and swears they are fully trained. Every. One.

I just don't eat out anywhere anymore (and I am Celiac) but whether you are or not, I'm all for you going gf. I just would love that you used medical testing first.

I also love that your doctor is trying to be informed!

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DJ4HEALTH's Photo DJ4HEALTH Posts: 43,996
5/1/14 11:04 P

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Mzzchief that is when I would of asked for the manager after she did that. That was not called for at all.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley


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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
4/28/14 1:02 P

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Well finally today after being gluten free dairy free for nearly a week. I feel a bit better. It isn't so hard to stay home even with 4 kids and a hubby. I do the majority of the cooking and they do the eating:) So staying home has turned into an easy option. Although I do find that I am cooking A LOT!

We are planning a trip for my daughters 8th Birthday to an amusement park and my hubby is already researching what food is available in the park and planning what places would be *safest* options. Even though the trip is 2 weeks away.

I'm terrified that I have my nieces graduation from Loma Linda University at the end of May and the family is huge into fried foods (breaded) pizzas and pastas and such. But her graduation is a huge deal as she finally has her doctorate and has really been working hard for years and years.

Im already the finicky eater in the group. Especially as a vegetarian. Im sure I will cause a stir when I show up with my mini ice chest of "safe" food, lol.

Thanks ladies for giving me a place to sort through experiences and whine a bit.

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MZZCHIEF's Photo MZZCHIEF Posts: 9,410
4/27/14 12:02 P

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There's nothing fun about giving up gluten.
But some of us have to do it.
Its relatively easy if you live by yourself and don't mind eating in.

But when everyone's going out, it can be a real joy sucker, bc some restaurants are deadly, like Cajun and Italian, bc they use wheat in so many dishes.

I was reminded of this yesterday when a group of us went to a Cajun Restaurant... one of the worst gluten offenders. I wasn't all that hungry so I went for a small side salad. There was another one I wanted, but it had croutons on it, the one I selected did not.t Thought it would be easier and I wouldn't be judged as being "one of those picky eaters" or give a big explanation no one wants to hear, so I went for the the one that wasn't as tasty.

Well...It came out with croutons too!
When I explained to the waitress, she took it away, clearly unhappy, and brought another. It was the same salad only she removed the croutons... something I could have done if it was merely a question of not liking croutons. To top things off, when she un ceremoniously dropped it on the table in front of me, the salad dressing went spinning off the plate from the force of the drop and all over the floor.... causing the very scene I was hoping to avoid.

As little as a crumb of bread can potentially trigger a reaction. So I picked out what I saw didn't have crumbs and ate that... leaving most of the salad behind.

A decidedly unpleasant experience.
Which is why if given a choice, I stick with Thai and Indian restaurants or those with a designated gluten free menu. Had I been hungrier, the choice at that restaurant would have been to order steamed veggies and poached fish or a steak.

: )
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CLS1789's Photo CLS1789 SparkPoints: (10,371)
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4/26/14 5:19 P

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Eating out can be stressful - but I am have been so pleasantly surprised by how willing people are to help me get something I want to eat. For example - there is a local Italian place I LOVE and I was sooo sad that I couldn't enjoy it anymore. But, when I mentioned it to the waiter, she said they could take everything I had on the pasta (the veggies and sauce) and serve it over broccoli instead. Yum! That inspired me to speak up at other places and ask for the giant sandwich I wanted but to be served without the bread. You'll get a few weird looks - but most people are responsive when you say you are allergic to wheat (not technically true - but it is easier to say than explaining everything). Good luck and don't get too discouraged. Vegetarian GF will take some commitment, but once you figure out how to cook the basics you will find it less and less a challenge.

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JANET552's Photo JANET552 SparkPoints: (215,689)
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4/25/14 5:40 P

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Going out to eat is difficult and you have to watch for cross contamination but it can be done. We have often been surprised the number of times a restaurant employee understands because they know someone with celiac.

This gluten free band wagon has really hurt people with celiac IMO. They think they know what it is like even though they can go gluten free when they feel like it.

I agree with the person who said it's harder to go GF than it is to be GF. Initially we were very overwhelmed but eventually things got sorted out. Good luck!!

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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
4/25/14 12:55 P

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Me too as today I feel so much worse. Dr. is referring me for endoscopy. He is putting the referral in today. I'm thinking the food I ate yesterday at Jack in the Box (southwest chicken salad with grilled chicken) that they claim is gluten free is the reason. But I just don't know and would rather have a test to see what exactly is going on in there.

I Just don't know and preferring a vegetarian lifestyle being gluten free and vegetarian is difficult unless I want to live off Bobs gluten free rolled oats and wild harvest gluten free organic peanut butter forever.

Edited by: MOMTOMYRTLE at: 4/25/2014 (12:57)
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DJ4HEALTH's Photo DJ4HEALTH Posts: 43,996
4/24/14 10:32 P

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That is because some people that don't need it are doing it to lose weight and the ones that have problems are looked at they consider faking it. Wish that they could be in my shoes and then tell me that.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley


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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
4/24/14 3:32 P

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Having a really hard time today staying positive. Family and I went out to eat and seriously it took me an hour online to find a gluten friendly place to eat. Then the food everyone else was eating were all my old favorites and I just don't feel satisfied. Is this common? I didn't even know gluten free was a fad apparently. Until someone looked at me and said "you too" and I had to explain what my dr. said. I feel like no one believes me especially since I have no idea what I'm talking about.

I'm determined to stick to this. I feel my Dr. is pretty reliable and well educated. He has to have some sort of medical reason to order this. Just wasn't prepared for the negative response from people.

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CLS1789's Photo CLS1789 SparkPoints: (10,371)
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4/24/14 1:21 P

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Sounds like going GF for a month or two is a great idea for you to try. The blood test can be misleading. My blood test was inconclusive, but the eventual endoscopy accurately diagnosed the celiac disease.

Going GF is harder than being GF. It is a little overwhelming when you look at what you have to change...but once you make the switch it is not that hard to maintain. And, at least for me, the consequences of a slip up are quite significant & motivate the strict diet adherence. Be careful about hidden sources (Soy sauce, canned soup, stock, meals cooked in beer, etc). If you need more help, send me an email.

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4/24/14 9:38 A

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The blood test does give false negatives sometimes. The endoscopy is the gold standard of diagnosis (according to our Clinic) but you have to be eating gluten or the small intestine may show healing.

When my DH was diagnosed with Celiac Disease, I remember feeling overwhelmed. He had diarrhea and was throwing up a lot. I suspect he had it a long time before we knew. A few years before his diagnosis, he fell and broke and/or cracked 8 ribs. The fall was not that bad and I could never understand how he could be so hurt from it. I believe he was having trouble already and all the calcium and Vitamin D he was taking was just going right through him.

When we started the gluten free diet, I felt like I needed to know everything yesterday. It took awhile but, a year later as I looked back I had to laugh at our reaction. We went to our local support group, a dietician, read a lot and called companies when in doubt. Now, it is just second nature. There are lots of foods out there and, while I cook more than I really want to, we have no trouble accessing good tasting foods.

My DH has immediate symptoms when he has gluten but everyone seems to be different in their reaction. He got immediate and obvious relief when he got the diet but lots had been going on inside him. His one year follow up endoscopy showed nearly complete healing in his small intestine which was nice to hear since we had read on-line that diabetics (he's a Type 1) can take up to three to four years to heal. That must mean you can't believe everything you read on-line I guess -- LOL.

Good luck!!



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DJ4HEALTH's Photo DJ4HEALTH Posts: 43,996
4/23/14 11:31 P

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Yes you can have a false neg test on gluten and the best way is to go off all grains and see what happens. Just make sure that you read all labels since they put it in all things including shampoo, conditioners and even toothpastes. So read all labels to see if it is in it. I know that tresamae will cause my head to break out is sores and be very itchy and have real bad dandruff.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley


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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
4/23/14 6:19 P

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heading to get the blood test as we speak dr approved it and called me back. Fingers crossed!

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KCFEMME's Photo KCFEMME Posts: 1,345
4/23/14 5:02 P

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Get the blood test. I had allergy testing which came back negative to all those food allergies, but Celiac doesn't show there. The blood did. Plus the endoscopy should be done sooner rather than later. If you go gluten free for 30 to 60 days, that will give your intestines a chance to heal and won't show what the gluten truly does in your case.

I've been mis-diagnosed for over 15 years, just went on a gf diet at the beginning of the year. Have noticed some of the symptoms getting better, not completely gone. But instead of pain level of 8 it's at a reasonable 3.

Definitely recommend finding out scientifically in this case.

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MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
4/23/14 4:10 P

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I see how a blood test could be insightful. Even if it came back negative I would still follow through with gluten free and see if it helped. All I know is that if the symptoms don't resolve in 30 days he is ordering and endoscopy. Wouldn't be helpful to have a blood test too? I have an HMO though maybe its harder to get approved through them I don't know. But I guess I could always call and request one. My doctor is usually extremely thorough and easy going so maybe I wont have to fight so hard. Especially if her orders it within the next 24 seems how I have only been gluten free for 24 hrs

I just put in a call we will see what happens.

Edited by: MOMTOMYRTLE at: 4/23/2014 (16:19)
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4/23/14 3:52 P

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Hi Jennie,

I would strongly recommend a blood test prior to going gluten free. I had to really fight for the blood test, but everything I have heard is that it's pretty accurate, especially the higher the number. The key is to be eating gluten when you take the blood test. I had the blood test done and the number was high, and the endoscopy confirmed that I was gluten free. However, it took a long time (over six months) before I noticed a difference, so going gluten free for a month may not solve your problem and the doctor may not think about testing you again. I actually was tested because of my migraines, I don't notice a big difference if I am accidentally have gluten, so I think it's very possible to have a minor reaction, but it still could be messing up your body in ways you aren't aware of. For example, after the endoscopy, my gastroenterologist said they would send the biopsies in, but he was certain I had it based on how my intestines looked, and he was right. So, I always encourage people to get tested right away. It's helpful to know if it really is Celiac because any gluten can damage your body so you know you can never have gluten, where as gluten intolerance isn't quite as bad if you have some (although not recommended).

I will say that when I found out I had celiac disease, I was extremely distraught, but there are a lot more options out there, and some gluten free bread and pasta that still taste very good. You do get used to it, but it is a very emotional since it is in so many things that you would normally never think of. The good news is I think there are a lot of resources, here on the board, or there are meetings/support type groups that you can go to. Slowly, it will get better. I really hope you feel better soon!

Susie

MOMTOMYRTLE's Photo MOMTOMYRTLE Posts: 35
4/23/14 3:32 P

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Hello all, My name is Jennie and I am new to gluten free living. I have been having on going stomach ailments for years that have been ignored, or miss diagnosed (and potentially missed diagnosed again but anything is worth a shot at this point)

Some of my symptoms over time have been upper right abdominal pain. That seems to happen sporadically and comes and goes usually after bouts of loose stool and constipation sorry if that's tmi. Bloating, gas, belching, G.E.R.D., Migraines, anxiety, extreme cravings and joint pain.

All of these symptoms have been evaluated and treated individually but never looked at as a whole until my regular dr got back my labs and ultra sound results. My ultrasound was to rule out gallstones. Which I am not at a high risk category for and his pa was grasping at straws when I went in with yet again another complaint of persistent upper right abdominal pain. I am 5'5" and weigh 124. I am a runner and love sports. I eat a vegetarian diet by choice (which has always been high in wheat, rye and barley)

So yesterday at a follow up my physician went over all my symptoms as a whole and asked how I felt after eating breads and pastas. Which I honestly replied bloated and gassy but I attribute it to the high fiber content. I did mention that eating on a flat belly diet plan did help alleviate my symptoms but was hard to adhere to because I craved breads and pastas bad. Which I also attribute to my running and needing the fuel.

After a few more questions about what foods were on that particular eating plan he got a look of "AHA" and said he felt I have a gluten intolerance and possibly something called Celiac. Which I have never heard of. He ordered me onto a Gluten Free eating plan for 30 days then a follow up. He said some of my symptoms may not clear up if it is Celiac Spru and will require endoscopy diagnosed it completely but he felt comfortable with trying the elimination challenge where I go gluten free for 30 to 60 days then slowly add back in gluten for a period of 6 days and asses. Due to my symptoms not being extreme. Just a mild upper abdominal pain with irregular bowel movements. So I left the doctors office with a potential diagnoses but no real answers as to gluten free or Celiac Spru. He did explain the disease to me but honestly it was all jumbled up jargin as things sometimes get when we are in the dr and in shock.

So I started researching and find myself even more confused. I get what gluten is. Im surprised it is in so many products (many of my favorite staples) I decided to get onto my long time fitness buddy spark people and search for people who may have some light for me.

Is it possible to have a minor gluten intolerance and never know it? Or minor Celiac? Are any of my listed symptoms the same as any of you. Im on day 1 and feel icky. Tired and unsatisfied. However I don't feel bloated at all and instead of looking 5 months pregnant I only look maybe 3 at most :)


I should add. That my doctor feels the blood test is inaccurate and has to many false negatives.

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