Very Afraid

[Mistyspark]

I am a 22 y/o female who has been dealing with a number of digestive/gastro issues for the past 2 1/2 years. My symptoms are occasional loose stools (once every 2-3 months?), occasional constipation, occasional itching on shoulders and back (like once a month before menstrual cycle), abdominal gas and bloating at least once a month. I've had blood tests, stool samples taken, and an ultra sound. I am uninsured at the moment.

I suspected Celiac Disease many times in the past and even went on a gluten free diet for 11 months starting in 2007. Prior to that, I tried to get several doctors to test me for it but they all brushed it off and didn't bother do it. The diet didn't help even though I cut out all gluten and pretty much everything including most fruit, all dairy, soy, corn, and even some vegetables. I seem to have trouble digesting sugar, dairy, legumes, tomatoes and prunes/raisins. I was just getting thinner and sicker by the day. I later suspected Candida and even tried a candida diet for 3 months. It helped maybe slightly.

I had been diagnosed with Gastritis a few weeks ago and was put on medicine, which did not help. So I went back to eating Atkins style for a couple weeks. As soon as I got off the diet and started eating normally, I had loose stools for a day.

My question is, can someone with Celiac disease not react at all to a diet free of all gluten, dairy and pretty much all processed food for a solid year? Or is there even a possibility that I have Celiac disease? I can't afford a biopsy at the moment.

[lou1]

I am a 22 y/o female who has been dealing with a number of digestive/gastro issues for the past 2 1/2 years. My symptoms are occasional loose stools (once every 2-3 months?), occasional constipation, occasional itching on shoulders and back (like once a month before menstrual cycle), abdominal gas and bloating at least once a month. I've had blood tests, stool samples taken, and an ultra sound. I am uninsured at the moment.

I suspected Celiac Disease many times in the past and even went on a gluten free diet for 11 months starting in 2007. Prior to that, I tried to get several doctors to test me for it but they all brushed it off and didn't bother do it. The diet didn't help even though I cut out all gluten and pretty much everything including most fruit, all dairy, soy, corn, and even some vegetables. I seem to have trouble digesting sugar, dairy, legumes, tomatoes and prunes/raisins. I was just getting thinner and sicker by the day. I later suspected Candida and even tried a candida diet for 3 months. It helped maybe slightly.

I had been diagnosed with Gastritis a few weeks ago and was put on medicine, which did not help. So I went back to eating Atkins style for a couple weeks. As soon as I got off the diet and started eating normally, I had loose stools for a day.

My question is, can someone with Celiac disease not react at all to a diet free of all gluten, dairy and pretty much all processed food for a solid year? Or is there even a possibility that I have Celiac disease? I can't afford a biopsy at the moment.

You really need a biopsy. I had a blood test which came back negative, and then later I had a time geting my Dr. to do a biopsy and the test came back blunting of the villa, w/lacerations. I had been

trying for years to find out what was wrong with me. and the biopsy gave answers to all my questions.

I still have digestive problems, but emotionally and physically I feel lots better. Oh, my diagnosis is

celiac spru, I also have HD, the blister, rash,etc. I was diagnosed in 01/08. Oh, and I forgot to

mention I have been gluten and casin free since then. I think it takes a while to heal. Good luck to

you

[mushroom]

There is still a definite possibility of celiac disease; also nightshade intolerance. You are maybe still in the early phase and that is why you don't notice much improvement. I went on like that for over 20 years before I self-diagnosed my gluten intolerance. Then eliminated all soy, corn, eventually nightshades (but forgot about the potato starch in most gluten-free flour mixtures, which was causing the itching on my shoulders. It seems like there is a gradual progression of this disease and sometimes early testing will not pick it up because not enough "damage" has been done. But if you wait for the damage, you can get really screwed up. I have psoriatic arthritis because I was not diagnosed soon enough. Unfortunately, by the time that the current tests show positive you may have done more damage, some of which cannot be reversed. Before going gluten free perhaps you could try eliminating the nightshade family (potatoes, tomatoes, peppers, eggplant), maybe corn and/or soy, and see if this makes any difference to your life. These are often intolerances that go along with celiac. If they help, then add in the gluten avoidance and see what happens. This is all I can suggest, because unfortunately at this early stage the celiac blood test might come back negative, falsely so, because it requires a high level of intolerance for a positive.

Good luck on your voyage of discovery. Unfortunately this is a condition where we have to do a lot of the work ourselves; we can't just go to the underinformed docs and ask "what is going on?"

[Mistyspark]

Thanks for the quick responses you two. I'm desperate for any help.

I went on like that for over 20 years before I self-diagnosed my gluten intolerance. Then eliminated all soy, corn, eventually nightshades (but forgot about the potato starch in most gluten-free flour mixtures, which was causing the itching on my shoulders. "

I forgot to mention that at one point, I was eating pretty much chicken, beef broccoli and rice for several months. I reacted to everything you mentioned (peppers, tomatoes, potatoes, soy, corn, legumes, raisins, sweets etc.) pretty much everything I ate made me feel awful. I recall there being a time that I had a glass of orange juice and broke out in a rash/diarrhea that lasted for 2 weeks (the orange juice was gluten free).

I also forgot to mention that a family member of mine has Crohn's disease and a few others have diabetes II. Does this all mean anything? And i'm thinking of starting on the gluten free diet again minus everything mentioned above.

[Mistyspark]

As mentioned above, I can't afford to get a biopsy so i'm kind of in a loop here. Should I continue eating gluten and hope that sometime in the future I can get a dx? I would really like to get a dx as soon as possible, but in the state I am in right now, that doesn't seem possible.

[The Fluffy Assassin]

As mentioned above, I can't afford to get a biopsy so i'm kind of in a loop here. Should I continue eating gluten and hope that sometime in the future I can get a dx? I would really like to get a dx as soon as possible, but in the state I am in right now, that doesn't seem possible.

I'm with you; unless they legalize bank robbery, I'm unlikely to be able to see a doctor any year soon. I'd recommend going off gluten and all the things you're pretty sure you react to (soy, dairy, nightshades, etc.). Also, be sure that your makeup (especially lipstick) and shampoo and soaps are gluten-free (casein free, soy free, nightshade free, etc.). You can get help with this on this forum's Gluten-free Foods, Products, Shopping and Medications board, either by starting a new thread or searching the old ones.

Welcome, and good luck to you. I hope you find your answer soon.

[mushroom]

One other intolerance I forgot to mention is citric acid, recently developed, which has seen farewell to lemons, oranges, practically all sodas, and a lot of sauces which contain lemon juice/citric acid. I used to think no one could be intolerant of fruit, but we are all different and have to discover our own intolerances which seem to go along with celiac. Have you distinguished between lactose and casein intolerance? Some people can handle the casein, others can't. If you are only lactose intolerant you may be able to eat yogurt, cheese butter, even sour cream., all the products which have had the lactose cultured out or removed. If you are casein intolerant you have to eliminate all dairy. Most celiacs are initially lactose intolerant, not all are intolerant of casein. (Just trying to help keep some things in your diet )

It is frustrating to have no insurance, and the doctors hold the key to all the doors. There are some independent stool- and saliva-testing labs like Enterolab and Diagnos-Techs which some of us have used, but they are not as definitive as the blood test and biopsy and you have to pay for them yourself again - about 2-300 dollars..

[Mistyspark]

One other intolerance I forgot to mention is citric acid, recently developed, which has seen farewell to lemons, oranges, practically all sodas, and a lot of sauces which contain lemon juice/citric acid. I used to think no one could be intolerant of fruit, but we are all different and have to discover our own intolerances which seem to go along with celiac. Have you distinguished between lactose and casein intolerance? Some people can handle the casein, others can't. If you are only lactose intolerant you may be able to eat yogurt, cheese butter, even sour cream., all the products which have had the lactose cultured out or removed. If you are casein intolerant you have to eliminate all dairy. Most celiacs are initially lactose intolerant, not all are intolerant of casein. (Just trying to help keep some things in your diet )

It is frustrating to have no insurance, and the doctors hold the key to all the doors. There are some independent stool- and saliva-testing labs like Enterolab and Diagnos-Techs which some of us have used, but they are not as definitive as the blood test and biopsy and you have to pay for them yourself again - about 2-300 dollars..

Thank you lol. Yes, I did find that I can drink a little cow's milk and have a little cheese if it is melted with 0 reaction. However, I also discovered that eating yogurt and non-heated cheese makes me sicker than a dog.

Yeah, I looked in to one called Entrolab or something like that but that's just beyond my budget. So I think i'm gonna just go gluten free again anyway because of my situation.

I'm going shopping today, I will be avoiding everything listed above and pretty much all processed food and will stick to things like meat, veggies, and non gluten flours/rice cakes/rice cereal. I'm going to replace some things like toothbrush and pot holders. Just looked through the forums on what to do. I do have pots and pans that I cooked with prior to being gluten free but I only steamed veggies and stir fried meat in olive oil with them so I won't be replacing them. I don't have a toaster oven and I don't use wooden spoons, I use baking soda in place of toothpaste.

Thanks guys for the help. I'm thankful for this forum and I will hang around for a bit to get as much info as possible.

[grainfree]

Mistyspark, Many people have adjusted their diets and lifestyles without need of a definitive medical diagnosis of celiac disease. Please remember though that refractory sprue is a condition in which the intestine is unable to heal even after maintaining a gluten absent diet. I agree with your and the other posters' replies and suggestions: being gluten-free again could most certainly help with immediate symptoms, while further could be considered down the road. I wish you very good health.

[grainfree]

And there is everything right with you that you are questioning your health symptoms and searching for answers.

[Mistyspark]

And there is everything right with you that you are questioning your health symptoms and searching for answers.

Thank you so much for your advice. Yes, I would like to get a diagnosis but it's not really something I can see happening anytime soon. So I started the gluten free diet yesterday and am seeing some improvement. My stomach doesn't hurt anymore and my joints don't hurt so much anymore. My skin is still a little irritated but I take it that's going to be the last thing to clear up.

This refractory sprue you speak of sounds very scary and is something I don't want to have.

[grainfree]

Mistyspark, I'm happy to hear you are noticing improvements so quickly. I cannot tell you what to do but can tell you I hope that the gluten-free diet eliminates all symptoms for you quickly! (I didn't mean to alarm you with the refractory stuff - hoping the diet will make you feel better!)

[Mistyspark]

3 days in to my diet consisting of no gluten, corn, night shades, fructose and dairy and i feel pretty much back to normal. Last time I did this, I was eating fructose, maybe thats what was hindering me. But I still can't help but wonder if I should press harder and try to get a biopsy/blood test to confirm that I indeed have Celiac disease, just so I can get people to take me seriously and so I don't begin to doubt myself sometime down the road...It would cost a lot of money for me to get these things done, money that I and my family don't have...

[ravenwoodglass]

3 days in to my diet consisting of no gluten, corn, night shades, fructose and dairy and i feel pretty much back to normal. Last time I did this, I was eating fructose, maybe thats what was hindering me. But I still can't help but wonder if I should press harder and try to get a biopsy/blood test to confirm that I indeed have Celiac disease, just so I can get people to take me seriously and so I don't begin to doubt myself sometime down the road...It would cost a lot of money for me to get these things done, money that I and my family don't have...

I could be wrong but I think once you have gotten farther on in the healing that is going to remove a lot of the doubt from your mind. After you have healed a bit more you can try adding stuff back in one at a time for a week and watch for a reaction. With refractory sprue people don't respond to the diet. You are responding so it is doubtful that will be an issue for you.

[Mistyspark]

I could be wrong but I think once you have gotten farther on in the healing that is going to remove a lot of the doubt from your mind. After you have healed a bit more you can try adding stuff back in one at a time for a week and watch for a reaction. With refractory sprue people don't respond to the diet. You are responding so it is doubtful that will be an issue for you.

Thank you for the encouraging response. It's my 4th day and i'm just feeling better and better still. I did slip up lastnight and ate some gluten free cookies (dedicated facility) which had milk in it and suffered some gas. But other than that, I feel fine. I just won't do that again for a while lol.

[Mistyspark]

I think its safe to say that gluten has been my problem this entire time, as I have been tested for pretty much everything but gluten intolerance. Every doctor i've seen has basically said that I was perfectly healthy (which I knew I was not ). I guess I just wasn't seeing much of a difference in the past because I was still eating sugary foods and night shades. But I definitely feel almost 100% better in less than a week, as I avoid gluten, nightshades, dairy and sugary foods (Not quite 100% because I still have a bit of anxiety, but its getting a little better. I've had it almost my entire life). But my gastro/skin problems are nowhere to be found. All gone. I haven't gone a day without feeling some sort of pain in years, and I haven't had my symptoms come back since I started this diet. I hope to be able to gain weight sometime soon, as i've been rail thin most of my life. Thanks you guys, I appreciate your help. I will see you all around.