Need Some Advice Biopsy Was Negative Gi Refused To Take Further Action!

[cszymanski12]

So I am fairly new to this all and I am slowly learning day by day the extensive detail and such of celiac disease. I honestly feel like I know more than these doctors do! I had a colonoscopy and endoscopy with biopsies. No blood test was done and has not still been done or skin biopsy of my rashes. The GI found hemorrhoids and a few areas of concern so he took biopsies of my esophagus?, stomach?, and one small biopsy of the beginning of my small intestine only. He did not take more than one biopsy of the small intestine to get any of the patchy areas where the villi could be destroyed. COme to find its like a basic general screening he did of the biopsies that included celiac but also other GI diseases. My biopsy came back neg and Im so distraught. I was so sure it would come back positive. I have all the symptoms and I have the rashes and I am sure they are DH or something very closely related to gluten intolerance of a high amount. I have paid personal attn to see after I eat these things how horribly sick I get. I immediately get a distended tummy like a half an hour later, headache, diarrhea, abdominal pains and pains on my right side by my gallbladder, and vomiting sometimes retching. Its followed by the many other symptoms celiacs experience. Im so itchy its insane i feel like im being eaten alive here.

Well my GI his nurse called and told me the results and said well just drink your miralax and such and ull b fine with managing IBS. I was like no! I told her how sick i was feeling and i have lost so much weight. SHe said to go back to my endocrinologist and that it wasnt celiac or GI related then with the rashes and this was the nurse telling me this. ANd i asked about the serology and she said no there was no way I had celiac and I know that this was her talking and im sure she was not confirming with the GI.

I have been slowly starting Gluten-free food and its fantastic I am not seeing direct results completely. However, I can see the diff. I can enjoy my meal and i feel like i may b experiencing withdrawl from the gluten but its not worth feeling so sick. I noticed i dropped some flour on my legs when baking cookies with my roommate and i had these red bumps and a rash all over my thighs within an hour i was shocked.

Does anyone have advice for me? I need to see a diff doctor who will screen me etc. I am feeling down now and I feel like Im going to be labeled a "head case." THis nurse thinks since im 21 and such im just stressed and I want attn or close to it. Thats an awful stereotype, and i have been sick my whole life chronic infections, viruses etc and I just want to be healthy. I hate the bloating, gas and pain and just being ill from all this I literally feel like I am falling apart and I have come to see thats what happens does anyone have some helpful advice im stuck!!!???

Thanks

[T.H.]

Sadly, your story is not that rare.

From what I've seen, there are two choices for you.

1) Find another doctor, ASAP, and get tested.

or

2) Screw the doctor, go gluten free anyway.

Either way - ditch the doctor. If they won't listen to their patients, they don't deserve any patients.

Often, people here tried going gluten free even if ALL the tests were negative, because there CAN be non-celiac gluten intolerance, and there's no test for that. So even if you get a doctor who does all the tests, they may still be negative, and you'll be in the same place: deciding whether to go gluten free on your own or not.

You can get a dietician yourself, too, without a doctor's reference, and they can help, if you decide to do it on your own.

I'll be honest...I'd just say screw the doctor. Admittedly, I was diagnosed with a positive test. So was my daughter. My son, however, tested negative. I took him off gluten anyway, and his symptoms improved, so he's off it now too.

I think a lot of it depends on what you need the diagnosis for. If you need it re: your work or something else, then you should go for it. But otherwise, I guess the question is: do you need a test to believe what you are experiencing with your own body?

[Takala]

Your personal experience with the food you eat is more important than any doctor's diagnosis, or lack of one. You are allowed to chose the best food for your body, and if it's not what the other 99% of the population eats, so what ?

[cszymanski12]

Thanks for the helpful advice. Im sorry for ranting and babbling. I just need to vent about all this because its so frustrating when the doctors are just wasting time picking off one thing at a time for your diagnosis. I have started completely on gluten-free now and I feel much better. Im still feeling sick still sometimes and I think that might just be there being certain ingredients that maybe doing that. Ive really dug into it and bought a book to help me shop etc. I was given info today for a GI back in chicago where Im originally from who specializes in metabolic diseases and gastrointestinal diseases and autoimmune diseases. He said I should not have to be afraid to talk to my doctor about what I think is happening because its my body. He said its his goal to get to the source because no one deserves to suffer. So lets hope this one helps. I read into it in the books I was given by my mom and friend (who is a celiac) and it says just as you all said that there are cases where you will test neg but that doesnt mean to abandon gluten as the issue. Some have a very bad intolerance and high sensitivity to gluten without the autoimmune component. That may be what I have, however I still havent had the blood test and this doctor said he would want to re-biopsy since some doctors dont necessarily know what to look for. Or might not have the experience and understand areas to biopsy and the need of more than one.

Im not looking for a severe diagnosis, I just want an answer something so I can feel better and feel like I can enjoy life again. Im doing this gluten-free no matter what because I am tired of going through these awful symptoms and suffering. My mother has had very similar/ worse issues and never has got tested. Very possible that there is a parallel between us both. I want to get the "official" of which of the relationships to gluten I am for future for my children and especially my job.

You are right sometimes you have to say screw the doctors, because life isnt worth suffering while they take their time and your insurance is being wasted away. Today he sent me to get a pregnancy test a blood test?? I havent had my cycle in 4 months. I am not sexually active and there is NO WAY I can be preg not even possible. I have ovary issues cysts to be specific polycystic ovarian syndrome or I forget the exact name is what my gyne has been on the look out for since I was like 17. I have had several biopsies of my ovary etc you name it. My cycles have been off since forever either every 2 weeks, 2 months without it and then its never ever the same and such. I have lost a ton of weight with this disease (what ever it is exactly) dont want to false diagnose here even though we all just have that idea that we know what is wrong. Additionally, I have had the malnutrition and such along with this reproductive issue. I was very very offended. He said he knew that I had a major intestinal issue but he wanted to have the preg test done and then put me on Provera????? What relation does this even have to do now with my health. Thats way off track. I did not go today for the blood test which ill call and tell him why tomorrow. I have a right and I think its justified here that I didnt does anyone agree????

He is seeming to stereotype me because Im a 21 almost 22 year old female who is beginning the core of my career in veterinary medicine and that of course being preg must be thought of here?? I cried about it I was so offended and I called my gyne and she agreed that was irrelevant. I am experiencing GI related issues along with other system issues because what this has done to my body. Including these itchy itchy red papule bump rashes and these cyst like hard firm bumps under areas of my skin on my back, butt, face and arms and such. Any advice here???

I feel like I have new questions everyday here but im learning alot from all of you that are experienced and its helping and keeping my spirits up. I know there is still hope for a diagnosis of full blown celiac here because of the serology and a proper biopsy. Either way id accept if i was neg and just highly or severely intolerant the gluten-free is helping my life! This has taught me that you just need to be ur own advocate and save yourself.

***Oh and my PCP today that I seen who I originally was getting the work-up until the GI that I seen today said that the blood tests for GI diseases and such are not very diagnostic??? Does anyone have any thoughts?? I didnt want to push and sound crazy and say well celiac thats a important test and for him to do it. It sounds like either way here I need a better doctor because I should have that test and a skin biopsy as well.****

Thanks again everyone

[eatmeat4good]

If you have DH, it is worth knowing that many with it do not test positive on blood tests or through intestinal biopsy, yet those with DH are extremely sensitive to even trace amounts of gluten through cross contamination.

IF you want a diagnosis from a Dr.,I would recommend you get the sores biopsied next to a lesion since that is where the IgA antibodies lie. A dermatologist can do the biopsy. But if you have gone gluten free it will be negative. Be aware that a lot of dermatologists don't recognize DH, and some refuse to test for it.

If you are certain yourself that you have Celiac, then forget the Dr.'s and go gluten free.

If it is Celiac DH, Dermatitis Herpetiformis, then the antibodies will also be activated by iodine and you may need to limit iodine in order to heal. This would be in fish, shellfish, asparagus, carageenan in dairy products, and salt. Temporarily you would need to use uniodized salt until the sores healed.

The good news is, they can ignore an intelligent 21 year old who figured out what disease she had without help from the medical profession, but they can't make her eat gluten!

I hope you heal really fast!

[cszymanski12]

Thank You! That would explain why when Ive been eating ice cream and cheese with my gluten-free stuff and the sour cream that Im having issues still and feeling bad. I did not know that. Like you said the biopsy will tell if its DH and I know that it comes and goes and there are other rash type things associated with this whole disease. I will def fight to get that biopsy of one of these lesions and such because it feels like im being eaten alive at times like i dont even wear t-shirts anymore barely because im not happy with how bad my arms look. I def now recall the idea though about how the gluten-free will kinda mess with the tests for that though. Ill have to figure that out.

I can honestly say I dont know what I would do without the support on here. Feeling like you are alone and that you cant help yourself is awful. I just want to be healthy and enjoy things for once. I have been sickly my whole life chronic infections, viruses all that. My family has autoimmune diseases, colon cancer, IBD and such which arent autoimmune but the issues are there. My father has MS so our whole household deals with having to take caution.

I just dont want to be like sitting 25 years from now and finally get my diagnosis and think see I was right 25 years ago and no one listened and now im suffering to the point life is horrible. I know that at my age I seem to have little power but I am willing to put up the fight because I know that Im doing the right thing.

Is having GERD along with the IBS I have common or seen with Celiac at all???

[ravenwoodglass]

Feeling like you are alone and that you cant help yourself is awful. I just want to be healthy and enjoy things for once. I have been sickly my whole life chronic infections, viruses all that. My family has autoimmune diseases, colon cancer, IBD and such which arent autoimmune but the issues are there. My father has MS so our whole household deals with having to take caution.

I just dont want to be like sitting 25 years from now and finally get my diagnosis and think see I was right 25 years ago and no one listened and now im suffering to the point life is horrible. I know that at my age I seem to have little power but I am willing to put up the fight because I know that Im doing the right thing.

Is having GERD along with the IBS I have common or seen with Celiac at all???

I feel like I am reading a post that I could have written myself at your age. Do get the tests for DH as if that is positive you are also diagnosed with celiac. This info may help with a derm and if they will have them do biopsies in the areas that are really itchy, like your arms.

Open Original Shared Link

From the sounds of it your whole family should be tested. MS can be a misdiagnosis for celiac that has attacked the brain. If your father should actually be celiac the MS symptoms can resolve on the diet.

And yes GERD can come with celiac. For one person in my family GERD was her primary symptoms GI wise. She would also vomit which does not occur with all folks with celiac.

I hope you can get a diagnosis, you are young and can heal and it will also likely stableize your hormones and take care of the issues with your menses.

[cszymanski12]

Thank you so much for giving me that site to help with the DH diagnosis. I will start to get that looked into asap so that whatever it is I can start to get on my way for diagnosis and begin to heal as everyone has said.

I didn't think about the parallel between celiac and MS thank you for pointing that out. My family is becoming more aware of celiac because of what I am going through and are taking getting tested seriously. My little sister who is 16 I feel is well on her way to the same fate as myself, she and I have both had very poor immune systems and I know it would be in her best interest to get tested for it. I additionally agree that it is in the long run better for me to fight my way now to get my diagnosis since I am young and my villi if they are damaged (hopefully these new biopsies will catch that) they have the opportunity to heal and I can enjoy the many years I have to come and have children of my own.

A very close friend of mine lost her mother to celiac she was 65, and her whole small intestine the villi were just destroyed on every surface imaginable. She went on most of her life ignoring what symptoms she had and thought she could just adapt to them. My friend was diagnosed 3 years ago and luckily she has been healing little by little. I feel that having the opportunity to be able to vent and talk to those who have been getting through this for many years is so helpful. It gives me the spirit to keep working to get to my answer no matter what these doctors are saying. I honestly think I would have given up because I'd feel well if the doctor says its not possible etc then they must be right. From many on here, friends, and the extensive legit research I have done Ive learned thats not the case.

I hope to gain as much knowledge and such to give others as many of you on here are doing for myself and others who are struggling. I am hoping to have children even though I have the ovarian issue but i want to be able to do whats best for them and have my diagnosis before its too late so they dont have to go through the hardships and emotional roller coaster that I am going through.

In addition to my listful amount of symptoms and what I strongly feel is DH I have these very strange hard, firm, cyst or nodule like bumps in various places in my body. I have them on my back, butt, face, and then just a few random areas. Sometimes they come up like a purplish red like bump or what looks like a pimple forming. However, they hurt beyond badly to the touch and they are under my skin and a few came to rupture and clear fluid came out but the majority just then stay there and stay under my skin and they have been there a really really long time. Does anyone know what these are?? Or maybe what they would be associated with?? Or have them as well?? I read something somewhere about it having to do with the hair follicles and such and that they will go down after you start your treatment and diet with the disease. It made sense about the hair follicles since that is involved with your skin as DH is and the overall horrible dry skin as well.

I was also wondering does anyone feel that peppermint, chamomile, and ginger tea help them with their nausea and chest pain or burning sensation in their tummy etc.?? I also have been trying aloe juice which isnt to tasty but it helps my tummy so Im not nauseated and it helps me feel a little less weak overall. I wasn't sure if these were ok or not my friend who has celiac recommended it to me and I am not a tea person but it helps me feel better temporarily so I have been doing it.

Thanks everyone for helping with my questions it is really helping!

[eatmeat4good]

Yes, aloe and the teas you described are said to help the stomach.

I also used promthazine by prescription for nausea with no negative side effects.

If your nausea is bothering you, you might try asking for a prescription to see if it helps.

People also use crystallized ginger and say it helps their stomach.

I'm really rooting for you and I can so relate to your story. I hope you heal fast, I really do.

I, too, have had the kinds of cysts and lesions you describe. It is maddening.

I don't get them now, and I have been gluten free for 5 months. Just to encourage you on that note as well. Dermatologists have always said it was acne, but I can assure you mine was certainly gluten related.

[cszymanski12]

I was going to ask about the idea about a prescription for my nausea. I was on another anti nausea medicine but I cant remember the name and my mother who is a nurse just for my well being wanted me to try hollistic based approaches and try the teas my friend recommended. They of course help however I think I really could use an anti nausea medicine again even if it is the low mg dose.

Thank you so much for the support and understanding it brightens my spirits in regards to everything Im going through. I was referred to the metabolic specialist my friend was diagnosed with celiac from. I figured it was well worth the try because he listens and wants to work with his patients not against them, and he has experience is getting to the diagnosis of celiac. I talked to him personally he called me to schedule my appt. and he seems to genuinely be passionate about helping his patients. She said that he helped her tremendously and she trusts him entirely and that I will not have to worry about getting looked at as a nut case walking in there. He actually took the time to work a few days and link all her symptoms together. Crossing my fingers here

I have a couple questions that have popped in my head and Im sorry if its like a rant I just feel understood here and not afraid to ask for help.

My first is regarding what was mentioned about the dermatologist saying that the lesions and rashes were acne. I honestly am going through I think what might be the same thing here. My face my importantly its just awful!!!! I have these like "flush" breakouts and they are not pimples!! Thats how i know something is wrong here they are like under the skin like kinda hard red bumps hurt sooo badly. If i try to treat them like a pimple a clearish red liquid will kinda come out and it still doesnt help. It is all over and I was told it was acne 2 months ago. I noticed before my cycle was starting to be truly absent due to these health issues that this so called "acne" was not occurring in correspondence to it. And it would and still stays like now non stop. As I take full fledge into going gluten free now I will pay close attn to see if those go away with everything else. Does this sound like anything familiar or that anyone else has in addition to the other lesions and skin issues???

My next question is in relation to bowel movements. Ok so I feel like its either diarrhea or constipation. Its never normal its always just one or the other. I have seen it is consistent that I have diarrhea like an hour or two after Im eating gluten things. But im not understanding how does constipation then happen??? Im sorry if this is far fetched and too far medical for anyone to answer. Im just confused I thought that with the attack on the villi the food doesnt get absorbed and it just passes right out into the bowels or in some relation like that. So then how do you get constipated?? I hate the constipation its awful and sometimes lasts a couple days Im in horrid pain, very bloated gas filled and such. I have IBS but Im just wondering if anyone could help me understand the physiology here?

Ok last question for right now sorry everyone. So I could be totally wrong, it could be in relation to nothing or what not but in relation to my abdominal pains I need to explain what Im feeling and see if any of you know what im talking about or have an explanation. So after I eat gluten or whatnot I get a full full tummy distended and I have horrible pain on the top of my chest right side where my gallbladder is and it actually stings. THen it feels like my intestines are like twisting or like something is flapping over something else inside especially is i turn to one side or another its so freaky!! I also have this really weird observation. It might just be related to my bumps and lesions and itching beyond all reason. But I feel like I felt these lumpy bumps kinda firmish squishy like and they are kinda near my belly button like above it kinda and its not bilateral. I thought maybe it was fat but Im so thin i have none anymore there. Is it inflammation? Maybe related to my skin rashes and lesions and such? Or is it related to something else?? I feel like im crazy here =( It just felt weird to me. If its nothing I wont be offended and I understand its hard for me to clearly see because i itch my tummy and body in my sleep and its awful so im just curious??

Im sorry for so many questions! =( I just really admire the expertise on here and its more than any of these redic doctors have EVER given me hence far.

[mushroom]

Can't help with all the questions, but I was one to never have acne in my life. Not actually until after I went gluten free, and I am not young Both times I had this horrible red rash-type thing, once all over my cheeks and lower face, once just on my forehead, and they would not go away. Each time they turned out to be a food reaction, but I had to take acne medication to get rid of them.

As for the alternating diarrhea and constipation, no, you are not nuts. It actually happens all the time to lots of posters. While some just get one and some just get the other, many get the alternating version for no apparent reason - it just happens, so far as I know. But rest assured, you not alone.

The abdominal pain could be an extension of the bloating and distention of your abdomen. When you turn over in bed, your intestines rearrange themselves and the pockets of gas can move around. This is one possible explanation. I know my gas moves around a lot from standing up to lying down; when I lie down it presses up on my ribcage until sometimes it feels like there is a belt under my breasts that someone is tightening. But I cannot lie on my sides, only on my back. If you move from side to side the movement would be much greater.

[Korwyn]

Good Lord, why are you waiting to go gluten-free? One thing you mentioned (that I didn't see anybody else comment on) is that amenorrhea and reproductive issues are linked to untreated celiac disease. Also, the 'flapping' you are talking about, I experienced as well. I was having intestinal spasms due to the horrible strain my guts were under. I didn't develop that symptom until after my celiac disease triggered into full blown GI activity though. The previous 18 years of symptoms were not heavily GI related.

[etta694]

Irritated bowels can shut down.. at least mine do.

[cszymanski12]

In regards to the whole Provera thing I completely agree. My gynecologist had absolutely no idea what he was even thinking in regards to that. I have the issue of cysts on my ovaries and my gynecologist has continued to monitor my reproductive region my grandma (mom's side) had to have one of hers removed and my mother has PCOS so they are making sure that I dont have it. I also am like super skinny like I know after your body gets below a certain percent in body mass you cannot get the cycle anymore. I feel that with going strict gluten-free and getting the diagnosis from hopefully this new doctor that I will get on track again with it. I personally think its a combination of the stress, weight loss, ovary issue, and being malnourished in general. Im going to see my gynecologist quite soon and shes going to do another follow up as always. I had heard from my friend that is a celiac that PCOS can be related to having celiac or those that are celiacs have this sometimes too. However, from my growing knowledge on this disease there are just lists and lists of symptoms its associated with.

Thank you for the clarification on the bowel concerns and the GI as well. I only ask because its scary not having my diagnosis yet and then noticing changes with all these symptoms. I am kind of confused though because my biopsy was negative. Now I know this GI took only on biopsy and sounds like it wasnt in specific to even directly just celiac but a general one. However, I was reading some more today in this book I obtained from a instructor I had in veterinary school and shes celiac and I am kinda confused now.

Ok, so I know that biopsy is like gold standard for diagnosis. However, it has come to my knowledge that with this disease thats not necessarily the case. I have read many of you tested positive with the serology or sensitivity test etc. So my question is then if you test positive for the serology and your biopsy reveals not any flattening of the villi you still can have celiac?? Id assume it would be in regards to just how bad its gotten and been missed for treatment. With my symptoms id assume I would have a positive biopsy next time this new doc does it. But it sounds to me like many get the confirm through diet and the serology etc so the biopsy doesnt happen?? I think I might be talking in circles here and I apologize. I had also read that there is another invasive thing that can be done by having the person swallow a tube that goes into the intestines (them being sedated of course) and then they can see if the intestinal fluid has the antibodies and such?? It scares me a little because it just seems like I read that there are lots of ways for the blood tests to be false neg and such which we all dont need. I am preparing myself in case I am just highly gluten- sensitive I read that the stool and saliva tests are the best?? I wouldnt see why the blood test wouldnt be useful as welll.

But overall it seems the diet is the gold standard here and if you get response there than screw what the doctors say and the tests. I know that the elimination of nightshades, soy etc. may also need to be eliminated with gluten alot as well. With these rashes on my body I just at this point dont care what needs to be taken out of my diet I just want to feel better. I will be more observant about the sleeping thing I noticed that sleeping on the right side is a super no no and in a reclined position on my back kinda helps. And the gas thing I def agree with i feel like I have it all the time with gluten intake.

Does anyone additionally have any ways that when you get into a doctor or such how you can push to get these blood tests and such to get tested whether its celiac or celiac and sensitivity?? Im really glad I stuck to my guns about that preg test just absolutely redic. The provera was also just out of line. I never was even on birth control long becasue Im not sexually active and it was causing me issues even though it helps with cysts not so much here. I know i have always had issues with my cycle so I am not surprised. Oh my friend who is a celiac mentioned someone she knows with celiac who is 27 I believe was dealing with repro issues and she was diagnosed with premature menopause?? Anyone know or have heard about that??

Thanks for the helpful answers everyone! I had an awful day today I gotta just get in to this doctor sooner then next friday and go strict gluten free nothing else. Lots of gas and bloating and pain today =(. My poor cats have health issues as well so its just one happy health corruption at my apartment. I guess thank goodness I am a board certified veterinary professional and I can help get theirs under control. I just need to find those human doctors out there that will do the same. UGH sorry for the ranting!! Again I am extremely grateful for all the help and advice I really am.

[txplowgirl]

FORGET the dr's and go gluten free say for about 6 months. If nothing has resolved then go back to the dr's for more tests. Simple as that. Your body will tell you what you need to know. Listen to it and save yourself the misery.

The tests are notorious for coming back negative even with all your symptoms and some on here have had even worse symptoms than you have had and they came back negative but resolved gluten free.

Just my opinion.

I had spent over 30 yrs going from dr to dr trying to figure this out. Them telling me one thing or another not really helping at all, telling me it was all in my head, I was just trying to get attention, I was a hypochondriac, I was depressed and needed anti depression meds. I thought I was dying.

When I finally read about the gluten causing most of these issues and the possible negative tests I didn't hesitate. I went gluten free immediately. Best thing I have ever done.

I hope you get to feeling better.

[eatmeat4good]

Start tomorrow!

I agree with the guy who said "Good Lord, what are you waiting for?

We want you to feel better.

Pretty sure you will!

[cszymanski12]

FORGET the dr's and go gluten free say for about 6 months. If nothing has resolved then go back to the dr's for more tests. Simple as that. Your body will tell you what you need to know. Listen to it and save yourself the misery.

The tests are notorious for coming back negative even with all your symptoms and some on here have had even worse symptoms than you have had and they came back negative but resolved gluten free.

Just my opinion.

I had spent over 30 yrs going from dr to dr trying to figure this out. Them telling me one thing or another not really helping at all, telling me it was all in my head, I was just trying to get attention, I was a hypochondriac, I was depressed and needed anti depression meds. I thought I was dying.

When I finally read about the gluten causing most of these issues and the possible negative tests I didn't hesitate. I went gluten free immediately. Best thing I have ever done.

I hope you get to feeling better.

I appreciate that! I would your judgement especially because Im sure that you went through many more years of tears, frustration and pain. I honestly cant say now that in hearing it over and over I dont agree the diet is the best idea strict diet. Because this is the treatment for it either way. Why not save myself the money time and suffering. Im very sorry that you were mistreated like that by so many doctors and I admire your advice. I have been through 5 so far and I feel exhausted and like punching one of them. You would think that since it is universal with celiacs and gluten intolerant people experiencing the same prejudice that they would up the education and such on the matter.

It is so disappointing but its not worth wasting your money over. You can make the same decision yourself and none of us have that degree. I additionally really believe what you say in regards to testing and it being negative. I cant even imagine what some must go through with symptoms. I know I feel like i just jumped like 60 years of my life and Im barely making it. I pray for those who have it worse. I had felt like I was the only one at first that was experiencing the disrespect from these doctors. Telling me that I was looking for attn, that I was anorexic, or that I was a hypochondriac. Even if they didnt say it to my face. I have held back even coming forward about all the awful things im experiencing because I was afraid of that treatment. Now I know what everyone meant by "head case."

I remember last week when the nurse of my GI called and ripped me apart. Telling me there was no way I could have celiac the one small biopsy that was taken came back neg. It was a general screening. I knew more but kept my mouth shut I wanted to tell her how wrong she was. I told her how awful I was feeling and how things were not at all different and Im in alot of pain and I am so nauseated. She said well its not GI so call your other doctor. Who was she to say that to me. She said just take your citracil, suppositories, and such for your bowels and that will all go away. I should have reported her because she was "diagnosing" me in a indirect sense. If something happened to me it would be her fault but they always find a way around it.

It is comforting to see those that have had a long and horrible journey of years and decades fighting to get their diagnosis have just went gluten-free and it has changed their life for the better. I value that more than any written piece of paper telling me what I have and why is it worth it to hear the same thing everytime a doctor sees you. I will see what this metabolic specialist will do for me. In the meantime its not worth suffering. Its time to step over the bridge and just make everything gluten-free. I know I have lots of support and many to ask for advice in foods so I wont be alone at all in this journey. I want to feel like my self again my mood and the entire list and list of symptoms I have that I mentioned way way in the beginning not even including it all which im sure everyone on here has a novel's worth. Thank you for your advice I am again very appreciative of it.

[cszymanski12]

Start tomorrow!

I agree with the guy who said "Good Lord, what are you waiting for?

We want you to feel better.

Pretty sure you will!

I am going to the store with my friend who is a celiac tomorrow! Thank you everyone. I feel like I have a extensive network of family on here almost. It honestly would top anything a doctor could ever present compassion upon. I additionally send out prayers and hope for anyone else who is going through this beginning stage, and those who have been fighting it for years or their whole life. I trust what I hear on here from everyone more than I ever would a doctor. So no point in wasting money. I know its going to be rough a big change for me. However, I would trade it for how I am right now. There are lots of resources, friends, and the extensive wonderful people on here that are so kind to share their advice and tips to help others. I hope sometime down the line I will have that knowledge and be able to help someone who I will see is in the shoes I am in right now. I will still see the specialist, but Im going to start my diet because everyday I wait is another day that is causing damage to my body. I can always go back on it briefly before the test is done, and the villi dont heal that quickly usually months from my understanding or longer so if it is going to test positive it still should. Either way like others have said the test is not and have been proven to be extensively wrong. I am glad that many agree on that.

If the diet is working then that alone in itself is a fair enough answer. I can always take out soy, nightshades etc if I am still feeling ill. I feel i will need to do soy as well with the gluten it is causing issues I feel as well. i am going to jump into this tomorrow I hope that I can start to get the hang of it all as time goes on. Thanks

[mushroom]

No need for thanks (although they are always appreciated ) Most of us have been standing in your shoes at some point or other, except for the lucky few, and we are only too happy to shine a light down the path of recovery. I hope that light leads to good health and wellbeing for you, and if it does, share the joy and the information. That is all that we can ask. And we are always here for you in time of need

[frieze]

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