Emily Elizabeth

I would definitely say that you should put up with the pain for a little while longer if you can. I read a book on celiac disease and it said that in order to ensure your test results are accurate, you should have at least the equivalent of 4 slices of bread a day for 2 months. Nothing would be worse then your tests being falsely negative and you having to go another 2 months to find out if they were accurate or not.

If I were you, I would begin learning the gluten diet though. This way, when/if you are diagnosed, you would have a good idea of what the diet entails and what in your kitchen you need to give away. If you bake, start cleaning your kitchen of all loose flour (rolling pins, cook books, etc), check your sauces and condiments for gluten, even check your lipstick and chapstick. This way, you will be confident of the gluten free diet when/if you do need to start. I think the hardest part for me was learning what I could and couldn't eat. It seemed to take forever. I also found out later that my lipstick had wheat bran in it! The book I read says even 1/8 tsp a day is enough to keep you sick. So it's pretty overwhelming trying to make sure it is eliminated from your diet.

If you know the diet well though, you could probably start feeling better quicker then most of us who eat gluten unknowingly for weeks before we finally figure out everything that we can't have. On a side note, I would not recommend eating supposedly gluten free cereals in the beginning. I was eating Puffins and Mesa Sunrise and couldn't seem to get rid of my symptoms. When I stopped, I felt 10 times better! Others on the board said that they think these products are contaminated with gluten since they are not made in dedicated facilities. I have a cereal recipe if you are diagnosed and are looking for a healthy cereal that is definitely gluten free. Just let me know! Good luck!

should i be going gluten free or should i put up with the pain for the next few months so that the test result is accurate?

Your advice would be much appreciated!

I wish I had an answer for you. Maybe try not eating 2 hours before going to bed and don't lie down 2 hours after you eat either. I know that really helps my mom (she has Barrett's Esophagus). This could help you feel better, but I wish I could help you figure out why you feel that way.

I recently made a new post called heart flip flop. Now i dont think it has anything to do with my heart. This is the sensation i get when i try to fall asleep: As i lay there getting tired and trying to fall asleep, i get this wave of fear feeling that starts behind my sternum (almost takes my breath away), then it moves down into my stomach and a big jolt (spasm) and its over until the next one. I tried to check my pulse while having these symptoms and it doesnt race or anything. I have been having a little more GERD lately and bloating, but i cant pinpoint what it is or where it is exactly coming from. Could it be Esophagael spasms, reflux, gas in the upper gi, ????????? Any ideas. If it was heart related why would it almost predominantely only happen when going to bed, and sometimes after eating?

I'm so glad you liked the recipe. That's the great thing about it... it seems you can tweak it all you want and it still turns out great! Today I added a mashed banana and flaked coconut and it was wonderful! I'm excited to try adding raisins like you did! I was worried they wouldn't cook right for some reason. Maybe it will remind me (slightly) of my old favorite, "raisin bran."

I followed your recipe, but with a few tweaks.

I used puffed brown rice cereal, almond meal, flax meal for my 1 cup mixture, then followed the rest of the recipe, but added a bunch of raisins. oh, and i used chopped walnuts for my nuts. oh yeah, and i threw in some hemp and sesame seeds too. yummy, thank you so much!! I had no idea that you could use raw quinoa in such a way!

This all sounds familiar to me! I was diagnosed with celiac in May, but was feeling the same frustration as you before diagnosis. I looked pregnant every afternoon and worse at night and was eating constantly. Even my co-workers thought i was pregnant! The only advice I have is to hang in there. Unfortunately if you have celiac you have a tough road ahead of you. In probably about 4 months though, you should feel better then you have maybe even in your entire life! Make sure that you eat plenty of gluten right now (they say 4 slices of bread a day) before all of your tests. That way they will be able to properly diagnose you. I wish you the best of luck!

Does this sound familiar to anyone? I could sure use some advice!

Your symptoms definitely suggest celiac from what I have read. The only thing I haven't heard about is a decreased appetite. But that could be due to the fact that food is making you sick, so subconsciously you don't want to eat. I know at one point I started eating a minimal amt each day and felt much better (though I lost too much wait). Anyway, the most important advice I can give you right now is to make sure you eat gluten everyday until you get tested with both a blood test and endoscopy. If you stop eating gluten you may produce a false negative. They say you should have the equivalent of 4 slices of bread a day for 2 months to truly know if your test results are correct. So as long as you can handle the symptoms, definitely eat gluten until you are diagnosed!

i know you all are not doc's but i was wondering if i could have your feedback. I am not being tested until the end of this week. i have had g.i. problems most of my adult life - dx'd with irritable bowel but nothing really helped and i dont have the "classic" constipation-diarehha. i can go 2-3 days without a bm and then go up to 10 times the next day - but not diarreha, just constantly urging to go - and i do. i have mild cramping in my abdomen 4 out of 7 days and i take peppermint plus for that and it helps. my most aggravating sx's are a general achiness, especially my arms and hands and fatigue. i also have a poor appetite. i dont feel like this all the time but can for anywhere from 1- 10 days at a time - then it just goes away. may come back again in a week, might be a couple of months. i have never tied it to one specific food but there was an article in our paper about celiacs and it sounded alot like my symptoms. what do you think and if i go gluten free - and that is the cause - how long until you usually feel better?

thanks alot for your feedback!

Wow--that looks delicious!

The Honey Rice Puffins could have been a problem, also. They are not made in a dedicated facility and I react to them.

Anyway, yours looks healthier and tastier

That's very interesting about the Puffins too! I guess I just chose the wrong gluten-free cereals! I'm thinking more and more that it's cheaper and healthier to make my own food from scratch. Luckily I enjoy cooking!

Here's a great recipe for cereal/granola that I just posted that may be helpful. It's great for snacking and you can add some olive oil and more nuts and honey for added calories. it would probably be good with raisens or other dried fruit, but I have yet to try it.

(Now, i'm guessing on the measurements since I never measure - but it's a pretty forgiving recipe. I have yet to make a bad batch)

Emily's Heart Healthy Granola Cereal

1 Cup - Any mixture of the following to make 1 cup - Rice Flakes, Quinoa Flakes, Flax Meal, Polenta (Corn Grits), Ground Rice (You can grind regular uncooked rice in a blender or food processor)

1/4 Cup - Flax Seeds

1/4 Cup - Quinoa (uncooked)

1/4 Cup - Nuts (I use flaked Almonds and chopped walnuts)

1 tbsp - Cinnamon

2 tbsp - Honey

1 - egg white (1 whole egg is fine too)

Optional:

1 tsp - Vanilla Extract (gluten-free of course)

2 tbsp - Rice Bran (for added fiber!)

Preheat the over to 350. Get out a cookie sheet or jelly roll pan and lightly grease the bottom unless it is non-stick (I use an olive oil spray). Combine all ingredients in a bowl and stir until mixed. If the mixture is not sticking together so it could be formed into a ball then add another egg white and possibly more honey. Dump out the mixture onto the cookie sheet and spread around so that it is no more than an inch high in any one spot. You don't really need to make sure it is in separate pieces as it will break apart during baking/flipping. Bake 10 mins. Flip the cereal over so that both sides get cooked. Put it back in the over for another 10-15 minutes. Take out when it is golden brown and slightly crispy. It will harden all the way after cooling. It will resemble granola.

Good luck! I hope your daughter starts feeling better soon!

My daughter is a suspected Celiac and now possibly has dairy/casein issues, too. Can anyone help give ideas for snacks and meals? It seems like everything gluten-free that I had found for her that she'd actually eat isn't CF. Please help!! We're going to see a nutritionist next week, but I just want to be sure she's getting what she needs. She's so tiny and lost weight again this last week!

Wow! That's crazy! That really explains it then. I bet it was the cereal. I was so frustrated because I thought I had eliminated all gluten from my diet. I never thought to check the things that were marked gluten free.

Hi Emily,

Just noticed your post re: breakfast cereal Mesa Sunrise, in Ireland we had a major issue

with it in May! and recieved an urgent message from the Eviromental Health

and the Food Protection Agency about extremely high levels of Gluten contamination in this

'Gluten Free' Product.

.

Open Original Shared Link

I'd love to share the recipe!

I'm going to do my best to write it down since I honestly never measure anything. It's really forgiving though. You can really put anything into it and so far it has tasted good everytime! (Of course I always liked healthy cereals - Fiber One, Kashi, etc)

Emily's Heart Healthy Granola Cereal

1 Cup - Any mixture of the following to make 1 cup - Rice Flakes, Quinoa Flakes, Flax Meal, Polenta (Corn Grits), Ground Rice (You can grind regular uncooked rice in a blender or food processor)

1/4 Cup - Flax Seeds

1/4 Cup - Quinoa (uncooked)

1/4 Cup - Nuts (I use flaked Almonds and chopped walnuts)

1 tbsp - Cinnamon

2 tbsp - Honey

1 - egg white (1 whole egg is fine too)

Optional:

1 tsp - Vanilla Extract (gluten-free of course)

2 tbsp - Rice Bran (for added fiber!)

Preheat the over to 350. Get out a cookie sheet or jelly roll pan and lightly grease the bottom unless it is non-stick (I use an olive oil spray). Combine all ingredients in a bowl and stir until mixed. If the mixture is not sticking together so it could be formed into a ball then add another egg white and possibly more honey. Dump out the mixture onto the cookie sheet and spread around so that it is no more than an inch high in any one spot. You don't really need to make sure it is in separate pieces as it will break apart during baking/flipping. Bake 10 mins. Flip the cereal over so that both sides get cooked. Put it back in the over for another 10-15 minutes. Take out when it is golden brown and slightly crispy. It will harden all the way after cooling. It will resemble granola.

Enjoy!

Let me know how it turns out and if you make any tasty modificiations! I also make banana pancakes that are really good (in a healthy way of course - no sugar or fat) if you're interested.

Care to share your homemade cereal recipe?

Is anyone familiar with this panel?

Yes, I had my blood work sent to Prometheus labs too. Here were my results:

AGA IgG - 11.9 U/ml

AGA IgA - 5.9 U/ml

IgA ELISA (TTG IgA) - >100 U/ml

IgA IFA (EMA IgA) - Positive

Total IgA - 100 mg/dl

HLA DQ2 - Detected

HLA DQ8 - Not Detected

Results of my Biopsy - Inconclusive evidence of Celiac Disease (they did this first, then ran the blood test, they said that it was microscopic evidence)

Who really knows what all this means?

I have posted in the past my frustration with continuing symptoms (gluten free starting in May). Well, I just started feeling almost normal again this past Thursday. Finally! The one thing that has changed in my diet (as far as I can tell) is the fact that I started making my own homemade cereal from scratch. My grocery bills were through the roof and I decided to take a crack at making my own. Since then, it seems, I have been feeling much better!

Just for everyone's information, I was mainly eating Mesa Sunrise and Honey Rice Puffins. I am so happy to finally feel like I can handle this diet and I hope that this post will help others with the same problem start to feel better too!

Emily

I'm sorry to hear that you were diagnosed the day before your birthday and at 18! I wish you the best of luck in college with the new diet!

Thanks for your advice. My doctor is going to do the breath test for lactose intolerance. I am also getting tested for parasites. Thanks for the advice on looking up Ursa Major and Rachel_24. I'll see what I can learn from their posts. I can't wait until I'm done wondering. I just want to move forward with my life.

Looks like good advice from Elizabeth.

I'm also wondering if perhaps you are also sensitive to dairy products? Some celiacs react to casein, some to lactose; others only need to eliminate dairy until their gut heals from the gluten damage (which takes a few months).

If you check out Ursa Major on this board, she went through quite a hunt to figure out the many foods to which she was intolerant. She did so much research on food intolerances--she is very knowledgeable.

You might also check out Rachel_24, who has a whole thread devoted to other difficulties that can cause gluten intolerance. These include Lyme disease and mercury toxicity (from dental amalgams and vaccines). There are many people on that thread who have been diagnosed with one or both in addition to gluten problems.

Unfortunately, there are lots of possibilities--and most doctors simply aren't aware of them.

Good luck!

Thanks Elizabeth. I wish that I had a referral for a holistic doctor. I even asked my doctor to recommend a nutritionist and she said she didn't really have anyone that she would recommend. Ugh. I really need to do research and probably join a support group so I can learn more. One step at a time though right? Thanks again for your advice.

Emily,

I found that my regular doctor did not prescribe any supplements for me. It was go gluten-free and come back in 6-8 weeks. Well, I took matters into my own hands and went to a holistic doctor that specializes in allergies and he put me on probiotics, digestive enzymes, Vitamins and a powder drink - all to help boost my immune system and help my digestive tract heal. What a HUGE difference this made. I would talk to someone about getting you on some sort of regiment of vitamins and/or supplements to help you out. I have also found out that I need to cut out dairy (this disease really bites!) I had an episode after eating some ice-cream (yes, it was gluten-free - I checked with the manufacturer) so now no dairy.

Good luck with your follow up! If you feel that you need to have another endoscopy I would do that. You know your own body. If you are feeling better maybe tell him that, ask about supplements to aid you in your digestion and the healing process in your instestines and then schedule another appointment for another 6 weeks. If at that time you are not better than I would do the endoscopy. There could be something else going on.

You really are the best judge of your body and your symptoms.

Good luck to you!

Elizabeth

I was just diagnosed less then 6 weeks ago so I am new as well. I was REALLY overwhelmed with the thought of having to check soaps, shampoos and cosmetics on top of adjusting to the new diet and avoiding gluten when I went out to eat. I would recommend focusing on the food at first. As long as you don't ingest your shampoo, lotion, etc. you will be okay. I do recommend confirming that any chapsticks or lipsticks that you use are gluten free. I found out that one of mine was not. We end up consuming a lot more of that then we would think. They say that 1/8 tsp a day is enough to do damage to your intestine.

When I was stressed out that I was not getting better (haha still am, so I should read this myself!), someone told me that our intestine has to heal just like a broken bone has to heal. Even if your bone is in a cast and your are treating it with the utmost care, it will still hurt and will not heal right away. Do your best to eliminate gluten from your diet, but don't feel like you aren't doing things right if you are not feeling better right away. Take even the smallest signs of healing as a sign that you are doing the right thing.

I recommend buying the dining cards from triumph dining if you like to go out to eat. Its much less stressful. The cards come in all different languages explaining what we can and can't eat - Open Original Shared Link. It worked for me at The Cheesecake Factory. By the way, the Godiva Cheesecake is gluten free! Also Outback Steakhouse, Bonefish and PF Changs all have gluten free menus. Just be sure to politely ask that they use freshly cleaned pans and serving utensils to cook your food. I got glutened at PF Changs even after ordering from the Gluten Free Menu.

There are also a lot of good lists on this forum for what is safe to eat. If I question a product, I simply type it into the search engine and it usually comes up on this site. Here's a link to a thread where people list things that are safe: Open Original Shared Link.

The last thing I recommend is buying a few cookbooks if you like to cook and a book that explains the disease. I felt much better when I could bake the things I used to bake and especially when I read more about the disease. I'd be happy to recommend a few if you like.

I hope this is helpful. This forum has been very helpful for me.

Was just diagnosed this month with Celiac. Didn't realize you had to check your shampoo and soap?? Wow. If anyone has any advice they can give me for just starting out, Im feeling behind and I haven't even started yet! What kinds of things do I look for on ingredient labels on my food? How about on my shampoos, soaps, deoderants? AHH! Any help would be wonderful!!

Thank you so much! I don't know how I missed this post - I apologize for the delay! That's so funny that you mention Great Sage. An old friend of mine just told me about it this week. It turns out a lot of her friends have Celiac disease as well. She hadn't tried it yet though. It sounds wonderful! I am definitely going to check out the DCCeliac list on Yahoo groups. Thanks for your post!

Depending on where you are around the District, you may want to check out Great Sage in Clarksville. Open Original Shared Link

It is the only place around here I've found that actually identifies what is vegan (thus no dairy or egg), gluten free, or soy free, or can be made any of the foregoing. The last time I went I ordered a sandwich & when I said gluten free, I actually had two choices as to the type of bread! There is a Roots grocery store next to the restaurant also that has a nice gluten free section.

Have you joined the DCCeliac list on Yahoo groups? There frequently is discussion of local restaurants.

That's a good question. I wish I knew the answer. The machines typically use powdered mixtures, so I would definitely be cautious. I would ask someone to show you the ingredients. It's such a pain to have to do that, but sometimes it seems that is the only way to be sure.

Is whip cream gluten free? Im talking about the kind in a can, that the espresso stands use on mochas and lattes. I wouldn't think it has gluten, but i have been fooled before! Thanks everyone.

So last night I stopped eating about 4 hours before I went to bed (usually I eat up to 1-2 hours before since I go to bed really early - 8pm) and also didn't have any wine and was much better intestinally this morning. I still had soy today. I LOVE wine though, so I really don't want to believe that it is a problem! I did notice that I was worse on the days that I had red wine (my favorite of course) as opposed to white wine. I wonder if going to bed with an empty stomach is the key?

If you're using rice milk just be careful because some of it has gluten in it. I found that out the hard way.

becca

Yikes! Thanks Becca.

Talk about small changes making very large changes in one's life; it is kind of stupid that I have been dogged all these years because I have been eating grain and drinking dairy. They are suppose to be healthy and after all grain is the largest part of the U.S. Government's food pyramid.

I am baffled by that too! It's ironic that when I really started trying to eat "healthy" (which of course included lots of wheat fiber) I ended up being diagnosed with Celiac Disease. I am reading that the body can't actually digest one of the amino acid chains in gluten. Not everyone has the reaction that Celiacs do, but I am starting to wonder how healthy it is for everyone. I also read that years and years ago wheat did not have the chain that it has now - so we could have eaten it then! Very interesting stuff. I'll need to read the whole book about 5 times before I really understand it.

Anyway, I'm happy to hear that you are feeling better! Thank goodness you found that article!

I hadn't heard of that before. It sounds very interesting though. I definitely noticed that I was feeling better when I cut back on empty calories and ate only foods that were nutritious. This was before I was diagnosed though, so less food meant less gluten, so that could be another reason I felt better!

Thanks for your advice! I am going to ask about doing the celiac panel instead of the biopsy if they recommend it. That would be much better! You have calmed my nerves.

If you really want to follow your progress on the diet, you could ask then to do the celiac panel again to see if the antibody levels have come down at all. Ttg levels are often used for follow ups.

Thanks so much! I will keep looking forward to my 2 year mark!!

(((HUGS))) Hope you are feeling better soon!

I have my 6 week follow up appointment since I was diagnosed next Tuesday the 26th and I am very nervous. The doctor told me that I would have to have another endoscopy if I was not doing better. Now I am definitely feeling better, but I am still having intestinal problems (loose stools at least 4 times a day) but it is better then it was before. I don't have the fogginess or extreme hunger and fatigue or the pregnant belly. I also have noticed that I get more sick when I am glutened (or suspect that I am) so that seems to tell me that I'm not ingesting it everyday (I wake up in the middle of the night and have to urgently go to the bathroom 2-3 times).

What advice do you all have? If they suggest an endoscopy should I do it? Also, they never tested me for vitamin deficiencies. Should I ask that they do that?

I assume that it is definite that I have celiac disease right (wishful thinking)? I guess they are just going to check to see if I may have something else in addition to it?

Here are my test results (not really sure what this means):

AGA IgG - 11.9 U/ml

AGA IgA - 5.9 U/ml

IgA ELISA (TTG IgA) - >100 U/ml

IgA IFA (EMA IgA) - Positive

Total IgA - 100 mg/dl

HLA DQ2 - Detected

HLA DQ8 - Not Detected

Biopsy - Inconclusive evidence of Celiac Disease (they did this first, then ran the blood test, they said that it was microscopic evidence)

Thanks for any help/advice you can give!

That must be really hard to not have a reaction to gluten that you can identify. The first time I was glutened since I was on the diet, I was so sick, but ironically so happy at the same time because I at least new that I could tell a difference. I definitely know what you mean about being resentful. It's hard to watch my husband eat things that I can't. I don't want him to change his whole lifestyle just for me, but its definitely hard to see gluten in the house. I don't even want to have it near me! They say that just 1/8 tsp of gluten will damage your intestines. If I were you, I would go back to my doctor after it has been six months from diagnosis and have another endoscopy done. That way they can see if your intestines are healing. Hang in there. Hopefully you will feel better soon!

I'm pretty new myself, I was just diagnosed in March 2007. At first it didn't seem so bad, I never really like bread or anything anyway. But now that I'm realizing just how serious celiac is I'm starting to get really depressed. The fact that we have to look at everything like shampoo, makeup, soap, toothpaste, laundry detergent, is very overwhelming to me. And how even the smallest amount can do damage to your intestines. I can't even really tell when I've been glutened, I don't get sick like everyone else seems too. I cheated once just to see what would happen and nothing did. That kinda worries me because I could be getting glutened all over the place and not even notice. What's going to happen to me if I can't get completely gluten-free? I live with my fiance and a roommate and having to watch them eat whatever they want is making me resentful. Not to mention they are probably cross contaminating all the gluten-free food in the house. It just seems very hard to handle right now and I'm turning into an emotional mess. I hope the other newbies are doing better than me.

Julie

Edmonton, Alberta, Canada