All The Celiac People On This Website Had Bad Gi Symptoms

[possiblyglutensensitive]

Someone on the forum mentionned Dr Alessio Fasano as a celiac specialist, so I looked at his website and listened to a bunch of video testimonials.

ALL the people in the videos had SERIOUS GI issues:

Open Original Shared Link

Yet everyone here (and a bunch of websites) say a different story, that it isn't always like that. I spoke to a friend yesterday and she kept telling me how rare celiac disease and kind of making fun of my going gluten free.

I don't know, I think a part of me feels silly for going gluten free... and I'll be travelling soon and i just know I'm going to feel like a total alien for not being able to eat with my friends in restaurants (or being just neurotically careful about all the foods i order and eat).

I can just see it, all my blood tests are going to come back negative and I am really wondering why the heck bother???

I made some soup yesterday and it just tasted AWFUL. My whole life having to worry about gluten, for what? What if it's all in my head, even IF I feel better in a few months? (so far I don't feel better. it's been 2 days only though).

[coffeetime]

I had no GI issues at all, nor did one of my two children who are also positive. I was picked up in a screening after my brother was found to be positive (he had no GI issues either-and has now been found to have osteoporosis, anemia, thyroid issues, vitamin deficiencies)I was shocked when my test came back positive but find I no longer have the migraines, dizziness, and other neuro symptoms which I had no idea was related.

As for meals, it gets much better--quicker. You know your body, if you believe this is your issue, don't worry about what anyone else thinks just give it some time. In restaurants if there is not a gluten-free menu, I order a baked potato with no toppings except butter on the side or a side salad with no croutons or dressing.

[shopgirl]

Celiac Disease isn't rare. About 1 in 100 people have it. Most of them just haven't been diagnosed.

This is your anxiety talking. Stop worrying about what other people will think about you and concentrate on getting yourself healthy. You will be able to lead a normal life if you find you need to be gluten-free. It seems hard in the beginning but it gets much easier very quickly.

Try to be positive that this is the answer you're looking for and believe me when I say it isn't as difficult as it seems.

[Dixiebell]

My son was having some GI symptoms (stomach aches and pains, severe constipation, odd looking stools) headaches, leg and foot pain, several different types of skin reactions (small blisters, hives, red face and ears, dry patches and started reacting to latex). I don't know if this is related at all to celiac or gluten intolerance or just hereditary, but his vision is progressively getting worse. It has not even been a year yet and I had to take him back to the eye Dr because he was having trouble seeing at school again.

I had Very low vit D, depression, anxiety, bone, joint and foot pain, headaches and not too much GI problems. The only GI problem that would happen sometimes would be that my stomach would wake me and it felt as though I was in labor and I would be so tired the next day. My Dr told me my problem was anxiety. Well I don't have that problem anymore since going gluten-free.

If your friends ask why you are not eating certain things you can tell them you are having some issues with certain foods and you are trying to sort it out.

Sorry that your soup wasn't good, what type of soup did you make? You don't need gluten in soup to make it taste good.

Give it some time and take things one day at a time, it does get better.

[joshnjustinsmom]

Someone on the forum mentionned Dr Alessio Fasano as a celiac specialist, so I looked at his website and listened to a bunch of video testimonials.

ALL the people in the videos had SERIOUS GI issues:

Open Original Shared Link

Yet everyone here (and a bunch of websites) say a different story, that it isn't always like that. I spoke to a friend yesterday and she kept telling me how rare celiac disease and kind of making fun of my going gluten free.

I don't know, I think a part of me feels silly for going gluten free... and I'll be travelling soon and i just know I'm going to feel like a total alien for not being able to eat with my friends in restaurants (or being just neurotically careful about all the foods i order and eat).

I can just see it, all my blood tests are going to come back negative and I am really wondering why the heck bother???

I made some soup yesterday and it just tasted AWFUL. My whole life having to worry about gluten, for what? What if it's all in my head, even IF I feel better in a few months? (so far I don't feel better. it's been 2 days only though).

Just my 2 cents.... We are now in a society that is awakening to health. As a result some people take supplements, drink expensive juices, follow rigorous workout schedules, avoid carbs, sugar, processed foods or chemicals, and the list goes on. This is all done in the hope that individuals will feel great and live long, healthy lives.

So now, I have to ask.... If you end up finding that you feel much better and healthier from avoiding gluten, and whatever symptoms that you are having subside on a gluten-free diet, then what makes not eating gluten so different from all of the other things that the rest of society do to help them feel optimally healthy??

FYI... I have had a negative blood test, and perhaps my biopsy will be negative too, but if not eating gluten makes me feel like a human being again then that is how I will eat. There is no shame in doing what you need to do to take care of your body, and only you know how you feel. HTH

[GlutenFreeManna]

I didn't have really bad Gi symptoms prior to going gluten free. But I had:

Naseaua

Unexplain weight gain

joint pain

joint swelling

migraines

unexplained seizures/fainting spells

extreme fatigue--I used to sleep for 12 hours or more a day and still feel tired

anemia

muscle pain/cramping

loss of strength in my hands

constant sinus infections/nasal allergies

hair falling out in clumps

nails so brittle they split

An itchy/painful skin rash (DH?)

extremely bad short term memory loss to the point where I could not read a book

asthma attacks

anxiety almost to the point of agoraphobia

mild depression

chest pain and racign heartbeat

All of this and more has cleared up or gotten less since going gluten free for a year. Prior to going gluten free, I lost my job because I could no longer work. The doctor revoked my driver's license because of the seizures and fatigue. And I had to drop out of graduate school because I could not longer read the material I need to read in order to study. Just prior to the doctor taking away my driving priveledges I struggled to drive the 30 minutes to work without pulling over. Since going gluten free I have driving on several cross country road trips and did 4 hours behind the wheel without much problem. I'm still gaining back my strength but I have my health and my life back thanks to gluten free.

[possiblyglutensensitive]

thanks so much everyone.

about the soup, I just am TERRIBLE at cooking...

before, it was jiust so easy to eat hummus or cheese with pita or other bread, or to eat pasta, or a muffin...

now i WANT to cook and make lots of salads with quinoa, and beans, etc.

but I am terrible at preparing food, everything tastes AWEFUL, I think I am cursed.

[GFinDC]

Someone on the forum mentionned Dr Alessio Fasano as a celiac specialist, so I looked at his website and listened to a bunch of video testimonials.

ALL the people in the videos had SERIOUS GI issues:

Open Original Shared Link

Yet everyone here (and a bunch of websites) say a different story, that it isn't always like that. I spoke to a friend yesterday and she kept telling me how rare celiac disease and kind of making fun of my going gluten free.

I don't know, I think a part of me feels silly for going gluten free... and I'll be travelling soon and i just know I'm going to feel like a total alien for not being able to eat with my friends in restaurants (or being just neurotically careful about all the foods i order and eat).

I can just see it, all my blood tests are going to come back negative and I am really wondering why the heck bother???

I made some soup yesterday and it just tasted AWFUL. My whole life having to worry about gluten, for what? What if it's all in my head, even IF I feel better in a few months? (so far I don't feel better. it's been 2 days only though).

Ok, a couple things you may not know about. Celiac causes a wide wide range of symptoms in people. If you spend some time reading this board you will see there are people with joint pain, muscle pain, nerve problems, sleep problems, mental symptoms, skin problems, hair loss, GI problems, thyroid issues etc etc etc, not really sure where it stops. And then there are also people who have no GI symptoms at all (silent celiac), and seem to have no other symptoms either. It's not a one faced disease, it can imitate many diseases and have many symptoms. So just because my symptoms don't match yours or another person's doesn't mean we don't both have celiac disease.

If you don't know to how to cook you can learn. It's not like many millions of people haven't learned how to cook before. There are lots of recipes in the food / cooking section of this board that can help you get started. Try searching for breakfast ideas or snack ideas. There are plenty of them listed.

Like a previous poster said, there are many people with medical issues in the world, and it is just part of life to have to deal with these things. If you don't have issues yourself, you almost certainly know other people who do have some kind of medical issue. That's more the norm than the exception.

If you stick to the gluten-free diet for 6 months or so and then do a gluten challenge (eating gluten) for a week or 2 you will probably be able to tell pretty easily if it affects you. The exception is the people with silent celiac who have no symptoms. For them testing via antibodies or endoscopy are very valuable.

If you do plan to pursue further testing you should stay on a gluteney diet until the testing is completed. If you go gluten-free before hand the test results are even less likely to be accurate than usual.

[Judy3]

thanks so much everyone.

about the soup, I just am TERRIBLE at cooking...

before, it was jiust so easy to eat hummus or cheese with pita or other bread, or to eat pasta, or a muffin...

now i WANT to cook and make lots of salads with quinoa, and beans, etc.

but I am terrible at preparing food, everything tastes AWEFUL, I think I am cursed.

You don't have to be a terrible cook A few simple tips for you.

1. Soup - start with some chopped onion and fresh garlic chopped and cook in a little olive oil to get it started. The the sky's the limit, you can add, cooked meat, vegetables, broth, crushed tomatoes.

2. You can still have quick meals. Hummus is still gluten free but eat it with rice crackers or raw vegies. Pasta, use brown rice pasta and it's just as good. As for muffins etc... I've seen gluten free english muffins in the freezer case (a bit pricey but worth it if you want one)

3. Practice practice practice... Rome wasn't built in a day!!

[beefree11]

Someone on the forum mentionned Dr Alessio Fasano as a celiac specialist, so I looked at his website and listened to a bunch of video testimonials.

ALL the people in the videos had SERIOUS GI issues:

Open Original Shared Link

Yet everyone here (and a bunch of websites) say a different story, that it isn't always like that. I spoke to a friend yesterday and she kept telling me how rare celiac disease and kind of making fun of my going gluten free.

I don't know, I think a part of me feels silly for going gluten free... and I'll be travelling soon and i just know I'm going to feel like a total alien for not being able to eat with my friends in restaurants (or being just neurotically careful about all the foods i order and eat).

I can just see it, all my blood tests are going to come back negative and I am really wondering why the heck bother???

I made some soup yesterday and it just tasted AWFUL. My whole life having to worry about gluten, for what? What if it's all in my head, even IF I feel better in a few months? (so far I don't feel better. it's been 2 days only though).

How much does your friend really know about it? My daughter was diagnosed year ago and we learn something new and sometimes contradictory! almost daily. I personally have no celiac and/or gluten issues, although my daughter does and I am trying to help her.

I have read and will try to find the actual data, peer review research, medical documentation to support this somewhere and it might take me awhile, so please be patient--that one can be experiencing damage ie inflammation, even though they are not having upsets or problems. Especially - I read - during cross contamination.

I have also read on many posts here on this site that everyone is different. Different symptoms. Different metabolisms. Etc. You may eat a slice of regular bread and have NO symptoms that relate to an allergy/intolerance/sensitivity, but until you can see what the undigested particles are doing to your intestines, why take the chance?

I totally understand your frustration with cooking, baking, etc. I find it to be quite the project. I made gluten-free banana bread and had no idea what I was doing! Must buy a sifter . It was a little drier, but the unmashed banana chunks took care of that.

As for meals on the go? She does ALOT of fresh salads and raw bars.

Give yourself time with learning how to make gluten-free meals. No one complained about the lump of gluten-free dough I tried to pass off as bread. A good sense of humor helps too. I have purchased some premade frozen gluten-free meals for her, just in case. She hasn't gone after them yet, but they are there.

Last night I warmed up some gluten-free chicken broth and added some gluten-free rice noodles for when she came home from work, She warmed up some gluten-free rolls with a salad and it was ok. Although she came home early since everyone at work had joined for pizza.

Rice cakes. She loves them. Uses them with peanut butter/banana slices, turkey bologna/chedder, etc. And Fuze to drink.

[possiblyglutensensitive]

thanks everyone for all the encouragement and tips and important info (like sticking to the GFD for 6 months and then adding gluten back to see how I feel)...

needless to say I didn't like the way that website gave a biased POV on the matter.

I feel better from all your posts though

[Keela]

Connie Sarros's book, Cooking for Kids and Busy Adults has many simple easy to follow recipes to get you started cooking gluten free. It saved me when I started the diet.

[Ellette]

Gluten free pretzels with hummus! Mmmmm.

I totally understand how you are feeling in dealing with your friend, only I get that sort of thing with my mom not just with the possibility of me having Celiac (we aren't sure yet and I'd be willing to bet she does and my sister too), but my epilepsy which really hurts. She will make comments that makes it seem as if she doesn't believe I have it. Then she'll pull up something like the ketogenic diet without looking into it and get angry at me for not trying it even after I tell her I can't do it because I'm not a kid, it is a dangerous diet, and don't even qualify. She doesn't make sense because she hasn't bothered to learn about the disease(s), just like your friend. When I told my mom that my neuro thought I might also have Celiac she said she doubted it because people with Celiac always looked like waifs since they start to waste away. I gained over 40 pounds in one month while not eating with one seizure medication and haven't been able to lose it...I don't look like a waif. Thanks mom.

Everything I've read has said that yes, tummy trouble is common, but isn't a requirement. One thing that is listed as a certainty is that everyone has different symptoms.

You can make loads of tasty soups. Umm...I can stave off the waif look I'm not threatened with by eating cream based soups, so I don't make them often at all though they are lovely.

[Skylark]

Have FAITH in yourself. You've made the decision to try this diet and don't let friends and family sway you. You'll be so grateful if it helps with the depression and anxiety. My personality has totally changed for the better gluten-free and nowadays I'm generally relaxed and happy. I wish I had been off gluten all my life!

Cooking takes practice. Everybody starts cooking with some complete failures and truly awful food. It's the only way to learn how. I'll never forget my first attempt at stir-fry. Ewwwww! You might pick up a beginners' cookbook that has a lot of pictures and directions. There are some naturally gluten-free recipes in most cookbooks, plus there are more and more specialty gluten-free cookbooks available. Gluten-free baking is harder, so start out by learning to cook tasty meats, seasoned rice, and some homemade soups. I make a LOT of soups, and I freeze them in 2-cup containers to take to work and warm up for lunch. It's a rare weekend that the soup pot isn't on the stove.

[tarnalberry]

thanks so much everyone.

about the soup, I just am TERRIBLE at cooking...

before, it was jiust so easy to eat hummus or cheese with pita or other bread, or to eat pasta, or a muffin...

now i WANT to cook and make lots of salads with quinoa, and beans, etc.

but I am terrible at preparing food, everything tastes AWEFUL, I think I am cursed.

That's not an issue with the diet, though. It's an issue with the fact that people don't learn to cook these days. (ooo, is that a soap box I'm standing on? )

Give yourself some time. AND START WITH SIMPLE THINGS. People say "I want to cook!", go out and get a cookbook, and start by trying to make some moderately complicated recipe with sauces and precise requirements on cooking order/times, and so on, and it all just falls aparr. SIMPLE!! (Simple doesn't have to be less flavorful. Two kinds of beans, a diced tomato, diced green onions, diced cucumber, diced avocado, grated carrot, a pinch of salt and cumin and pepper, a splash of olive oil and apple cider vinegar, and you've got a tasty bean salad.

Look around in the recipes section and you'll find a lot of stuff that does not have to be hard at all!

[GlutenFreeManna]

Do you own a crockpot? You can make lots of EASY recipes with a crockpot. Find a recipe that looks simple and follow it if you have never cooked before. It takes some practice to figure out what flavors go together to suit your personal tastes, but you can do it. To start with check out the crockpot lady's blog: Open Original Shared Link Everything she makes is gluten free! This diet doesn't have to be about boring or bad tasting food. But it is a huge lifestyle change if you have never cooked before.

[Marlie]

Baking is the real problem with Gluten Free but it can be done, I'm convinced of it although I will say its not easy and I am in the learning stage. However, there are many foods that are gluten free by nature and there are many recipes in non Gluten Free cookbooks that you can make. The key to cooking is finding yourself some good cookbooks. A great place to start is looking at the reviews of cook books on (Company Name Removed - They Spammed This Forum and are Banned) and then going to your local bookstore and perusing the list you created from Amazon. Also look for recipes on the food network website, or bon appetit. The nice thing about many cooking web sites online is you can read the reviews.

[beebs]

Only 7% of people have gastro issues at all with celiac (it depends on which med study you read - some say 5% some say %) So I'm not really sure what the other 93% of people are sposed to do? My granddad vaguely felt sick in the tummy alot but nothing else and then developed bowel cancer at 48. Which he died from.

Also - my mother thinks she had suffered Celiac since her 20's but it was on and off and she didn't always feel bad and it was more annoying than anything else until she was 63 and all of a sudden bang she was really sick with really bad gastro issues. She now has irreversible damage, severe ostioporosis (her bones are as a 98 year old would be) She has no hips - they have worn into tiny sliver spike things, Bad arthritis, if you were to look at her you would not think she was long for this earth if you know what I mean. imagine if she had picked up that before and saved herself all this horrid stuff?

[possiblyglutensensitive]

thanks everyone. your posts mean a lot!

and I'm so sorry for all the pain you and your families have gone through.

[Marz]

Hello

Bit of a late reply, but just wanted to add my 2 cents. Your symptoms right now may be mild, but if you could look into the future, say 10 years from now, you may find yourself in a wheelchair, with serious stomach issues, GI cancer, neuropathology, osteoporosis, infertility, or just good old fashioned bad stomach problems.

Fortunately you've caught it early - revel in the fact that your body can heal itself properly, before much damage was done.

You also only realize once problems start falling away while being gluten-free, how many issues are caused by you eating gluten. The symptoms really have a huge range.

Lastly - my experience - was that I felt fine at first, just getting colds/flu very easily, and lots of sinus pain for no reason (I thought allergies at the time?). The next year was a few episodes of "stomach flu", increased trips to the toilet, and food sensitivities (Weird reactions to chicken, egg, turkey etc). I started picking and choosing food groups, trying to figure out what was making me sick, because I felt otherwise fine. 3rd year of feeling unwell, it really hit the fan - panic attacks, major d, shaking episodes, bad "stomach bugs", several days off work, daily nausea, emergency room trips. So yeah... it might be mild now, but you have no idea how much worse it can get! And my story is mild in comparison to people who have had several decades of not being well and doctors failing to pick up the problem! :/