New And Need Advice

[fryzway]

I went to my Gastro yesterday for a follow up. I have been having severe burning in my stomach and throat. I always feel hungry but can never eat a lot at one sitting anymore. Seems better in the morning before I start to eat for the day. I have no diarrhea or stomach PAIN per-say. I have not lost any weight, I actually am gaining weight! I had a biopsy and my lower intestine showed "blunting of the villi" and my blood work was negative for H Pylori and Celiac disease accept for 1 blood test, he didn't say which, was right on the negative mark. Which he called a "weak positive". Anyway, he gave me Cerefate to try for my Reflux, gerd, gastritis that I have. I also take Prilosec 2x day. He said if that didn't help my burning and false hunger pains that I could then switch to the Gluten-Free diet and see if it helps me. I have no family history on either side of celiac disease. I am a 26yr old male in overall good health. It is hard to say if I have any malnutrition bc he didn't do any blood work for that. So, I called him today and suggested he run a genetic test to see if I even hold a gene for celiac and if he could run blood work for vitamin and nutrient deficiencies as well as anemia. I am constantly tired and grouchy but I've been this way for a yr now. I have sever panic attacks also but I am also under the care of a Endo for very very Low Testosterone, which could cause most of my issues. My question to all of you who do have this, what was it like on a daily basis for you before you got your diagnosis and also was it a 100% YES from the Gastro that this is what you have. From what I was also told celiac is severely under diagnosed bc it is tricky to diagnose and just bc someone test negative for it doesn't mean they don't have it. Also, I was told there can be weak and false positive and negative test results. He said the Gluten free diet could actually do harm if you don't really need to be on it and it's very bland and expensive. HELP !!!

[Dixiebell]

Welcome to the forum fryzway.

A lot of people here, including myself, my daughter and my son had negative tests but tried gluten-free anyway and have gotten better. My son's symptoms are what led us to look for celiac. He had severe constipation, tummy aches, headaches, unexplained rashes, various types of BM's, he missed a lot of school and he is a foot shorter than his class at school. My symptoms were depression, anxiety, joint and bone pain, headaches, tired all the time (at my worst, I was taking three naps a day), once in a while I would have tummy problems, I even had to quit my part-time job. My daughter, she is 20, was vomiting and had D with blood and had to go to the ER three times because of dehydration. If she eats any gluten she will get sick three days later everytime. She made the mistake with Doritos the other day.

Eating gluten-free will not harm you. It is a little difficult at first but it is like learning anything new, it takes time. The food that I cook and eat is very good and not bland at all. And it only gets expensive if you try to buy all the gluten-free replacements. It is best to start with fresh meats and veggies.

About the genetic testing, most Dr.s only know about the two most common but other countries have found more than that. The testing for vitamin levels is good to do.

[Takala]

I am self diagnosed, based on my (many) symptoms AND various medical tests, which unfortunately the neurologist I had at the time could not and would not admit to withholding some of said test results because she had already labeled me a head case/MS/fibro and was ignoring what I told her about how I responded to a grain free diet. Alas I had not been "thin" since I was a small child (and then I was very thin) so of course how could I possibly be celiac or gluten intolerant.

I did not go on to seek an "official" diagnosis from any gastro, because by then I was completely and totally fed up that anyone who was having this many neurological problems could be repeatedly blown off by so many different doctors. I merely went back to the PCP and told them don't send anyone to this neuro because of what happened, and btw, I'm not eating gluten anymore, and you've noticed how many of my symptoms are resolving.

I was having severe bouts of ataxia (dizziness) and balance problems, loss of sensation and burning and twitching in my feet, legs, shoulders, hands, plus kidney problems, gall bladder symptoms, and arthritis flares, besides the heartburn and problems with eating anything with fat in it. Oh, and my vision was really messed up. Bone loss. Dry mouth/eyes. Brain fog. Asthma. Ob- gyn problems. There's more, but let's not write a novel here.

That being said, I am completely puzzled by your test result of blunted villi not resulting in a definite diagnosis of celiac disease. That is supposed to be The Final Word.

I don't know what the bleep it is about the false rumor that the gluten free diet is either harmful (altho I do know which dietician with some Celiac org keeps on giving interviews to the press that say this, and she ought to knock it off) or bland, I assume it is coming from people who are passive about their food and merely like to be fed by somebody else and not think about it, or just too busy to cook. No spices are made from wheat, rye, or barley. You would be shocked at what I can eat now that the true culprit has been taken out of my diet. It might be more expensive, but if you compared the cost of a single doctor's appointment and series of lab tests vs. how much more you would spend on food for a year with the gluten free diet, guess which number is economically cheaper ? I won't even go into how many prescriptions for the WRONG THING waste vast amounts of medical money every year, or how prescriptions end up costing a fortune when doctors won't give you a refill without an office visit or the impact of the upcharge to the uninsured making all medical debt rise in the USA.

It may be time for you to go on that gluten free diet option, and see how you feel. You may also need to go soy free and dairy or lactose free at first, those are the two other food intolerance things that tend to go with this. You may be able to add non lactose dairy back in later.

[fryzway]

Thanks dixibell. I'm glad I came across this forum. So, if I were just to start with say turkey,chicken, steak, etc... and a cup of veggies and some cottage cheese. I would see a diff in a week or so correct ? Also, could I eat lunch meat from the deli ? I looked at so much stuff and Hidden gluten words that are used on labels and it's all very daunting to say the least. I would almost rather stay how I am than try and keep up with it all. I know that sounds bad but neither me or my wife can make heads or tales of this disease and it's nutritional requirements. Do you have any simple ways for deciphering the labels on all the food or suggestions on what I could buy from my local supermarket ? Also, what can I use on my meats as far as things to flavor them, like ketchup and seasoning ??? Are their any in-expensive books that are like "celiac for dummies" lol !!!

[fryzway]

I don't know about the diagnosis. He said since I don't get diarrhea or puke or haven't lost weight and I'm not having any skin reactions he wouldn't say 100 % that this is celiac disease. He is going to check for vitamin/nutrient deficiencies and do gene test to see if I am even capable of having celiac. I never had any problems with my stomach until I got severe anxiety about 13 months ago and I've dealt with anxiety all my life but never this severe. He says that anxiety would have most likely triggered the celiac in my childhood. I have gastritis/gerd as well which are more of the symptoms I am dealing with. I always just feel so hungry and it's off and on, never constant. Celiac is constant correct ? I would love someone to be able to point me to recepies and help me make sense of all the "Hidden" gluten on labels. I wouldn't even know where to start on this journey. I wouldn't mind giving it a shot but it all just seems so overwhelming. I don't like the thought of eating out of a tuper wear container from pre-prepared food. I love going to eat and eating out. It's the convenience of it all that I will miss. I would love to try it and see if I feel better and if I don't then I won't have any regrets.

[Kimbalou]

Welcome to the forum. First of all, I have to say your DR. is full of BS to say the gluten free diet is expensive and can be harmful, bland, etc. What a load of cr$%! The only really expensive things are pre-packaged foods such as gluten free pasta, frozen dinners, etc. Or if you go to a gluten free bakery the cupcakes will cost about $3!! But you don't have to eat all that processed food at all. (I was diagnosed with a positive blood test and biopsy of my small intestine.)

Sometimes I feel sorry for myself because I can't just grab a cookie, cupcake or cracker...but that's ok because I don't really need those things anyway! The food I need to eat will make me feel better and give me more energy, that's how I choose to look at it. You should just go ahead and try the diet and see if you feel better. If you feel better, then great! You can eat a lot of food on this diet...meat, fish, eggs, cheese, fresh fruit and veggies, rice, potatoes, Rice Chex, Rice cereal,spices, etc. Just search this site for a list of the safe foods. Its really not that hard to avoid wheat, rye and barley. Let us know if you try the diet, it's really not that hard. My dr. told me it would be hard, but at least she didn't say it was expensive and harmful!!

[eatmeat4good]

You are way smarter than your Dr.

The blunted villi means you have Celiac.

The gluten free diet harms no one. It is just food minus Wheat Barley and Rye.

It is not more expensive for me because there is way less eating out.

We found a few gluten free products to make like easier. Like Udi's bread. That tip right there saves you a bunch a money from not trying crappy bread substitutes. We use Udi's bread for a "treat" not making a bunch of sandwiches a day.

Eat mostly meat, fish, fruit, vegetables, and nuts.

Learn to make your own gluten free cookies...

And you will be good.

I agree with the above posts completely.

You should have a diagnosis from what you shared, but you don't have a REAL Dr.

So...Physician....Heal Thyself.

You will feel better without Gluten.

And the best part is there is no such thing as the Gluten Police.

So eat well without gluten and heal.

Being grouchy, tired and having panic attacks went entirely away after I went gluten free. I was grouchy, tired and had anxiety/panic attacks for 7 years. No Dr. ever suggested Celiac even with multiple symptoms. They just do not know. And it is costing people their lives.

Knowledge is Power.

Once you know what gluten does and how to avoid it, you can have your life back. I hope you heal really fast.

[yorkieluv]

I know how frustrated you are feeling because I was just wanting someone to tell me definitely I did or did not have celiacs. Unfortunately it isn't always that easy because soooo many doctors are ignorant ont the signs and symptoms of celiacs, the proper test to run and how it is treated. I had a gastro doc tell me there was not way I could have celiacs because I didn't have diarrhea everyday. I had initially found out I had a problem with gluten by my primary doctor who really didn't have a clue about how it is treated. She told me I would be able to start eating gluten again in six months(go figure). Anyway I did a ton of research on my own went to a GI doc (prior to this I did the genetic testing because I wanted to know if I even had the gene, which I do I have a double DQ8) who was suppose to be a little up on celiacs but obviously he wasn't. After me informing him of everything I knew and that he didn't he wanted to refer me to a specialists who specializes in celiac. Since it was only a three hour drive my husband and I went afraid we were going to be told information that we knew was wrong but was pleasantly surprised. She was extremely informative and helpful and was going to write a letter to the doc that referred me and tell him a few things. She actually knew him because at one point years ago she taught him in medical school.

You know your body better than anyone and don't give up on finding the correct diagnosis. I would recommend changing doctors especially considering you have "blunted villi" which I was under the impression was from celiacs. The gluten free diet isn't easy in the beginning but it does get much easier. I haven't read anywhere that it's harmful if you don't have celiacs. As for being more expensive I disagree, it has made me eat healthier and eliminating eating out so much. I started feeling better within a couple of weeks so I didn't have any desires to ever eat gluten again.

This forum is awesome so keep looking for support to get through the tough and frustrating times.

[Dixiebell]

There is a 'dummies' book and it is very good.

Living Gluten Free for Dummies

[sa1937]

Are their any in-expensive books that are like "celiac for dummies" lol !!!

Well, actually the answer is YES! Living Gluten-Free for Dummies by Danna Korn is a good one. My DIL bought it for me for Christmas. Another excellent book is Celiac Disease: A Hidden Epidemic by Dr. Peter Green, Director of the Celiac Disease Center at Columbia University. Both of these are excellent resources for a newly diagnosed celiac.

As overwhelming as it seems at first, the diet is really not all that difficult and if you shop the outer edge of the store for veggies, fruit, eggs and plain meats, etc., it's not any more expensive than normal and you won't have to decipher a lot of labels in doing so. And if you check the recipe section on this forum, you'll find a lot of recipes to give you ideas of what to eat. I would also recommend ditching the dairy for now...I am/was lactose intolerant (just testing the waters lately to see how I can tolerate dairy products). You may very well be able to add them in later.

I think there is danger in eating out so I'd avoid it right away until you can get a handle on what you can safely eat. My daughter (also celiac) seems to do well handling the social scene and eating out but she lives in Denver, which is a celiac's haven for gluten-free restaurants.

And welcome! You'll find answers here for any questions you might have so ask away...