Devastated! Everything's Fine With Me?

[sonja69]

hi all!

had my biopsies (gastroscopy, colonoscopy) yesterday and everything looks fine. the sample results will be coming in january, but my intestines look fine and the whole blood work panel said that I am the healthiest person on earth!!

except for some increased white blood corpuscles (??).

yeah, I am so fit and healthy and feeling great with

- gas (flatulence)

- distented abdomen/bloating

- headaches

- abnormal stools (fatty, floating, with air, sometimes watery)

- no energy

- eczema in the face

- hairloss

I am really devastated, I wish I had a diagnosis (on something, all test are always fine) since friends and family will think I am insane, when I will be glutenfree volontary out of the blue.

and I am so pessimistic about it, I doubt it will help. sorry, but I think it's kind of punishment and I am afraid I have to stick with this problem forever....

Sonja

[Ursa Major]

Sonja, I totally understand what you're saying. Don't worry what others say, just go ahead and try the diet, you have nothing to lose. You waited until after the biopsy, no need to wait any longer.

By the way, even if the doctor claims that your intestines look fine, most of the time they really can't tell without a microscope if the villi are damaged. Many people here had their doctor say everything looked fine, only to get a biopsy report back, stating they had celiac disease.

But even if it isn't celiac disease, it could be gluten intolerance, which wouldn't show up in the blood or the intestines necessarily.

Often the response to the diet is the best (and only) indicator that somebody is gluten intolerant. So, no matter what anybody says, going on the gluten-free diet is an excellent thing to do. And you might be surprised at what a difference it could make. You won't know until you try.

My recent bloodwork looked perfect, too. And I am obviously far from well. My husband claims it is all 'spiritual', and due to me not reading the bible enough, and praying enough. Whatever. It is hard not to give up with 'support' like that. But I won't, he is wrong.

And anybody who will tell you that trying the diet is stupid would be wrong, too. Don't listen to them, and do what you have to do to figure out what is causing your symptoms.

[sonja69]

hi Ursula!

thanks for your really supporting and nice answer! feel immediatly better

but I am really sorry for you that your husband is not more supportive. you have been glutenfree quite long, why do you not feel better?

yeah, I know, negative tests do not say anything, but it would have make things easier...my husband is not very supportive or how can I say, rather indifferent, he's not very interested. he's never sick, he won't understand...my family has no idea about things, they just eat (even though my mother and sister have diabetes, even I eat less sweets).

but weird is that I do not have any iron deficiency according to the blood work, but I have had headaches now for more than three weeks and read that I could be due to iron deficiency. so, I took a supplementary and the headache is gone now (or much more weaker).

any experiences someone?

Sonja

[Guest nini]

even with my positive dx, my husband was initially very skeptical, until he saw how much better I started feeling (and unfortunately with me it wasn't immediate) and then when I put my daughter on the diet despite her negative tests, he was really skeptical until he realized just how much of a difference it really made (and how sick she got if she accidentally got ahold of some gluten).

People are gonna believe what they want to believe. For years my checkups and blood work always showed that I was the healthiest person around despite all my tummy aches and vomiting and depression and on and on, that's why I got stuck with the hypochondriac label and sent to psychiatrists. It wasn't until I was in my thirties and my health really started plummeting, and my blood work started to show hypoglycemia, anemia and other signs of malnutrition... but after ultrasounds on my gall bladder, stomach and liver and kidneys, my Dr. was convinced that I was making it up, until week after week I would show up in his office with projectile vomiting (right in the office) and severe diarrhea and cramping. Then he had to admit it was beyond his level of expertise and sent me to the gastroenterologist that correctly diagnosed me and ended my years of being accused of being a hypochondriac.

IF you are gluten intolerant, you may still be in the early stages of it where nothing shows, this is why trying the diet is your best option to see if it helps you.

[clhsc]

Sonja,

I understand completely how you feel. I feel like I have accomplished nothing (no dx) after being poked and proded for the past six months! It's very frustrating to feel that way. My new doctor said that I definitely have some sort of malabsorption problem and ran the celiac panel to check. It came back fine, but said gluten could still be the problem. So I am going to stick with the diet even though I have no dx of celiac disease. I had a colonoscopy Monday b/c colon problems run in my family and he said on first glance everything looked fine. He took biopsies and sent them off. I haven't heard back yet, but it will probably be fine too.

I am also not anemic according to the blood work, but have had horrible migraines in the past. Since being gluten-free I have noticed a significant decrease in my headaches. My neurologist told me to track my headaches by recording what time they start, level of pain, level of stress, foods I had eaten, and the weather. I noticed a pattern of high stress and high carbs. Try exercising to help your headaches as well. When I am in a bad mood, I run... find what works for you.

As far as the lack of support from family and friends, I totally know where you are coming from. My dad's side of the family thinks I am nuts (even though they are the ones with the colon problems - kind of ironic?) and is completely unsupportive without a diagnosis. They too didn't understand why I would willing go on this diet. Explain it to people like this... vegetarians go on diets because they choose to, your family members and friends are on the diet that they choose to be. There are all sorts of crazy diets out there (no offense to anyone who tried them b/c I have too)... South Beach, Atkins, Grapefruit, CABBAGE SOUP!!! People go on these because they hope to find something that makes them feel better outwardly and inwardly. You choose to do the gluten free life style b/c it makes you feel better (it also helps eczema). You are making the healthy choice for you.

They should support you because you are taking care of yourself. Who cares if you eat what they consider "weird food," it's actually an extremely healthy diet to be on because the naturally gluten-free foods happen to be fruits, veggies, rice, etc. Stick with gluten-free products and you will get better! And tell all the nay-sayers to mind their own business... you do what is right for you and your health. Once they see the results maybe their stupid comments will stop. If you ever need support this is the place to find it. I for one, am proud of you because I know how hard it is to stand up to your family and friends and to actually stick with the gluten-free lifestyle without support. But you can do it... and great health is the best result you could ever ask for. Good luck!

[CarlaB]

Sonja, don't give up. Try the gluten-free diet and see if you notice any difference. If you feel better, you have your answer and you don't need any medical test to tell you that you feel better off gluten.

I felt better removing gluten, but all my tests came out negative. I did not heal completely, so I kept looking. The most recent test I asked my doc to do was for Lyme Disease. She told me I didn't have it, but if I felt better ruling it out, she'd do the test. I even ordered the test myself from the lab! Guess what?! I've got Lyme Disease! I do have gluten intolerance, but it's likely a sensitivity caused by the Lyme. I encourage you to keep looking if gluten-free doesn't fix your health issues .... definately try gluten-free to see your response. Take charge of your own health and don't worry if people don't believe you're really sick .... many of us have been there!

[sunshinen]

You might also want to try treating for candida overgrowth. It has a lot of these symptoms.

[HollyJoy]

Hello all!

This is my first post - so I apologize in advance for the length; however, I have been reading the forum for over a month and have a lot to say. I am a person who had a life time of "figuring out" what causes me to feel so sick. Doctors have not been much help - I have had to diagnose every issue. To make a long story short, I have thyroid disease (hypo) and was dying from a house with a serious mold issue. Luckily, I have enough strenght not to succumb, but to overcome. Anyway, we got out of the mold about 5 years ago, and I was feeling pretty darn good, but not quite right. I was sooooo sick for 10+ years that the symptoms from my gluten intollerance seemed to be a mere nuicense, until I went on the diet! Following one week off wheat, I felt so much better that I asked to be tested. I started eating so much white flour prior to the test that my body was in trauma, but the blood test still came up negative. After having a similar situation with my thyroid (blood test was always negative, now I am on a full dose of thyroid medicine, and drs. can't figure it out), I realized that I couldn't depend on the test. My doctor failed to tell me that even though the test was negative, I could still have it. Instead, they told me it was a reliable, conclusive test.

Thank God I didn't listen. I have been (almost - had a few slip-ups) gluten free for 2 months, and WOW! One thing that was awful was going off of it. I would love to know if anyone else experienced this. I wasn't upset because of the diet - I don't care about that at all, but how sick I got for a few weeks. It was like going off of a drug I was addicted to or something. I didn't crave it, but felt really weird and sick. I was going to the bathroom like 2 or 3 times a day in the beginning. Thank God I work for myself! Then, my skin began to clear - my assistant said I look 10 years younger. Then, my nails began getting hard and breaking, instead of bending. Then, my bones and teeth began to get stronger (long story). Then, my panic and fears totally disappeared - I was so afraid for no reason. No more panic attacks. Then, my vision be came clearer and the light became brighter. I always told doctors that there was something wrong with my vision, and they basically told me I was a little nuts. Throughout the last 2 months, my life has changed in so many ways, I can't begin to even write it all. My sex life changed. My personality changed. I had a dent in my scull on the top of my head, and it filled in (hard to believe, I know). The spit in my mouth lost its thickness, and became clear and watery. I began to sweat more like a normal person. My periods changed. Everything is different - and that is stressful. I am not even the same person.

So, no matter what any doctor, friend, sister, in-law (or any other person who is not ME) says, I do not care. I am thanking God every day for giving me this answer. I am finally on my way, and everyone better get out of my way! You are the only one in your body, and you have to live in your body every day. I have been living my whole adult life with people (and I mean everyone!) looking at me like I am crazy, and you know what? It has made me realize that I am a stronger person for it. I can maintain my diet and no one would ever dream of telling me anything negative - they just ask questions, and I explain, and let it be known that my body is my responsibility - and that I am the only one (besides God) who can heal it! Let's face it, who is going to CHOOSE this diet? It's not like it is an easy way to live.

Holly

[lonewolf]

A year and a half ago ago my naturopath told me that "you are the healthiest sick person I've ever seen". (She actually did believe that I didn't feel that great, but couldn't figure out what it was.) Right after that I discovered that I was totally gluten intolerant (not by diagnosis, but by trial and error), not just "allergic to wheat". I've felt much better since eliminating all the hidden glutens. Experiment! Do what you know your body needs and don't worry about other people. You have to take your health into your own hands. I don't have an official diagnosis either, so I do understand. You just have to take care of yourself - you can do it.

[Lymetoo]

You might also want to try treating for candida overgrowth. It has a lot of these symptoms.

TRUE!!! Try the gluten-free diet....you have nothing to lose except all of those symptoms!!

[JenKuz]

hi all!

had my biopsies (gastroscopy, colonoscopy) yesterday and everything looks fine. the sample results will be coming in january, but my intestines look fine and the whole blood work panel said that I am the healthiest person on earth!!

except for some increased white blood corpuscles (??).

yeah, I am so fit and healthy and feeling great with

- gas (flatulence)

- distented abdomen/bloating

- headaches

- abnormal stools (fatty, floating, with air, sometimes watery)

- no energy

- eczema in the face

- hairloss

I am really devastated, I wish I had a diagnosis (on something, all test are always fine) since friends and family will think I am insane, when I will be glutenfree volontary out of the blue.

and I am so pessimistic about it, I doubt it will help. sorry, but I think it's kind of punishment and I am afraid I have to stick with this problem forever....

Sonja

Hi Tonya--

I had the same as you; endoscopy, colonoscopy both normal (though my doc opted to only do a biopsy of stomach and one of large bowel, because the small bowel "looked fine from the scope...." doesn't he know the damage is microscopic and can be invisible to the naked eye early in the disease? Clearly he didn't.), blood work normal...

But I had the enterolab tests done, and you can see the results in my signature. I cut out wheat for good immediately after the colonoscopy. My symptoms resolve quick as a snap. When I was tempted by a piece of flatbread while eating out, within two hours, I had the same stabbing pains in the gut that had sent me to the ER *and* three days of un-fun foamy smelly diarrhea. That was enough for me to know that I have a gluten allergy, whatever the standard tests may show. Sad truth = the standard tests ain't that great.

Try the diet and see how it goes. Give it at least three months. If the symptoms go away, and your satisfied with the answer, then good! If you want, you can do a "challenge" like my impromptu piece of flatbread...if symptoms return, then you really have your answer.

[sonja69]

hi all!

thanks all for your encouraging and comforting answers!!!

I definitely will try glutenfree after xmas.

maybe my problem is that's all my problem alone, nobody (except you) really understand.

I have issues with my stomach over 20 years now leading into eating disorders and psychological problems. the last 4 years is has gotten worse and worse...but I kind of get used to it since I had never pain (only real heavy pain having the period). my lactoseintolerance test 2004 was positive so I cut out lactose, I was hours in a shop reading all labels (lactose can be in the weirdest thing, like normal salt). I never got really better, just D went away for now floating stool. Because of that I was dissappointed and thought I am nuts or I was imagining my pregnant stomach because I had problems with it. my food diary (keeping it for a long time: do you wanna know what I ate the 16th september 2004? I can tell you...) do not give me any clue. AND: sometimes I have no problems with lactose and sometimes I do (another lactose test was negative in august 06...he??).

every doctor said I am fine, but now I figured out that 99% of them have not a clue about gastroeneterologic issues. everybody has gasses sometimes, headaches, stomach grumbling or quit coffee, smoking, too much stress....they said, yeah you surely know...

this and other forums really helped me, because I did not really know or couldn't imagine that other people might have the same problems. I was just only me looking pregnant after dinner, wasn't it?? And for years it was the only symptom despite skin issues and occasionally headaches and depressions, so I did not go to a doctor because I was ashamed of this huge belly.

now, I know better, and I know that food allergies will not only give coughing and sneezing issues. I ordered some books on allergies/intolerances and I learned a lot the last weeks.

I have planned that I will figure out this 'life puzzle' by this time next year. I have other things to do in my life!!! it's so time consuming!

TAHNK YOU all for your advices & for listening.

Sonja

[Michi8]

I had the same as you; endoscopy, colonoscopy both normal (though my doc opted to only do a biopsy of stomach and one of large bowel, because the small bowel "looked fine from the scope...." doesn't he know the damage is microscopic and can be invisible to the naked eye early in the disease? Clearly he didn't.), blood work normal...

JenKuz, it sounds like you had a similar experience with the endoscopy to mine...everything looked normal to the naked eye, so the dr only took a biopsy from the stomach and duodenum. I'm still waiting for the results, but am sure it won't give accurate answers. I am trying gluten free now, but have a colonoscopy scheduled for March. Do I need to still be eating gluten for a accurate coloscopy? I sure hope not, because I waited three months until I finally had my endoscopy to try the diet!

Michelle

[JenKuz]

JenKuz, it sounds like you had a similar experience with the endoscopy to mine...everything looked normal to the naked eye, so the dr only took a biopsy from the stomach and duodenum. I'm still waiting for the results, but am sure it won't give accurate answers. I am trying gluten free now, but have a colonoscopy scheduled for March. Do I need to still be eating gluten for a accurate coloscopy? I sure hope not, because I waited three months until I finally had my endoscopy to try the diet!

Michelle

That leaves you with some decisions to make about the meaning for you of a definitive diagnosis, as compared with the response to the diet that you've experienced and the invasiveness of the test and the potential pain of going back on a gluten diet. Only you can make this decision, though there are certainly plenty of folks around to help you see all sides.

[Michi8]

I didn't realize that colonoscopy reached the area that showed the damage...I had thought it was endoscopy/gastroscopy that gave a better view/access to the affected areas. Now, I'm not going through these procedures just because I suspect celiac...I need to rule out any other potential problems too. I'll try to talk to the dr (she specializes in celiac BTW) about ensuring there are enough biopsies. Unfortunately, she has an abominable bedside manner, and seems to dislike explaining anything.

I've only been gluten free for about a week (and am still making mistakes anyway). Maybe I'll go back to eating gluten around Christmas (it'll certainly make Christmas easier for me to navigate) and through to March then. It sucks, though, that the wait for these procedures is so blinking long...it was tough waiting more than 3 months for the endo!

Michelle

PS: Sorry, Sonja, for hijacking your thread. I'm sorry you haven't received clear answers yet...perhaps your tests will come back with some good info. You certainly aren't the only one in this boat. Re: the iron...do keep an eye on it. My first iron tests came back borderline normal, and the dr didn't bother to mention it to me. 2 months later, they were below normal, and we're sure that they had dropped even more 2 months after that (I had gone in to my dr to review all my blood tests over the last 6 months, because everything was coming back normal, but I was/am still having health issues and was getting worse.) I've been taking iron now, and it has helped some of my symptoms a bit.

[JenKuz]

I didn't realize that colonoscopy reached the area that showed the damage...I had thought it was endoscopy/gastroscopy that gave a better view/access to the affected areas. Now, I'm not going through these procedures just because I suspect celiac...I need to rule out any other potential problems too. I'll try to talk to the dr (she specializes in celiac BTW) about ensuring there are enough biopsies. Unfortunately, she has an abominable bedside manner, and seems to dislike explaining anything.

I've only been gluten free for about a week (and am still making mistakes anyway). Maybe I'll go back to eating gluten around Christmas (it'll certainly make Christmas easier for me to navigate) and through to March then. It sucks, though, that the wait for these procedures is so blinking long...it was tough waiting more than 3 months for the endo!

Michelle

The information I posted above was based on what I had learned from my doctor. But I just talked with the gal at Enterolab, and she told me that actually the endoscopy should be used for evaluating further down the small intestine, that my doctor was remiss for not scoping any farther than the duodenum. But if your doc only biopsied the duodenum, it's possible that she didn't scope farther, either. You need to ask her how far down she looked. As for myself, I'm baffled--my doc didn't actually look at ANY of my small intestine! Bah!

So I would try to ask her...or others on this forum...whether she'll be doing any other biopsies for celiac during the colonoscopy. If not, then you wouldn't need to add gluten back.

[nikki-uk]

You definitely need an Endoscopy for biopsies for a diagnosis of celiac disease.

A colonoscopy doesn't reach far enough up to reach the part of the bowel affected by celiac disease.

[JenKuz]

You definitely need an Endoscopy for biopsies for a diagnosis of celiac disease.

A colonoscopy doesn't reach far enough up to reach the part of the bowel affected by celiac disease.

See? My GI doc is a QUACK!

[Michi8]

Thank you JenKuz and nikki-uk for that information. I will continue with the gluten free diet then.

I'm pretty sure that my GI didn't bother going any further, because everything looked normal to the naked eye. I'm also sure that, even though she heard I wanted to check for celiac, that she probably dismissed it because no one else in my family has been officially diagnosed. She was totally unwilling to listen to any symptoms beyond GI issues...even though she may be specializing in celiac, it doesn't mean she's open-minded.

The colonoscopy is still important, though, to rule out any other potential health issues that could be responsible for my symptoms.

Michelle

[happygirl]

Sonja,

We are happy you have joined us!

We have all been in your situation at some point and it is so frustrating. There are many diseases that have overlapping symptoms. I also recommend trying the gluten free diet. It can't hurt anything at this point! You may have non-Celiac gluten intolerance, which would not show up on the celiac panels. You may have other food allergies/intolerances, with or without gluten. You may have something else entirely. Allergies and intolerances are tricky: they can all cause the same atypical symptoms, so its hard sometimes to know what the problem is, esp if it involves multiple foods. By the way, until your biopsy is back, you can't know that it wasn't negative. Just having it "look" ok is not the same as examining it under a microscope by a pathologist. Did they take multiple samples in multiple places? I am assuming you were eating gluten at the time of your bloodwork and biopsy.

I wish I could diagnose you and make it all better---don't we all! but if gluten is a problem for you, we are happy to help and support you on the diet, with or without an official diagnosis. positive dietary response is an important tool that is often overlooked. On the other hand, if gluten isn't a problem for you, we wish you luck and answers to better health. Let us know what else we can do to help you, and feel free to ask any questions.

And yes, it is the ENDOSCOPY in which biopsies are taken to look for Celiac (You might want to go back and edit your post---many board members recommend that so that it is not "kept" on here as fact. I have done it myself!!!! Many people rely on searches and do not read the whole thread.) The colonoscopy is important to look for other things like Crohn's, Ulcerative colitis, microscopic colitis, eosinophilic colitis, etc. etc. Sonja, have you had parasite testing done (stool sample)?

[missy'smom]

I had a dent in my scull on the top of my head, and it filled in (hard to believe, I know).

I don't want to but in and detract from the topic at hand, but I read this and reached up and felt mine. I swear it's barely noticeable. What's going on? I remember thinking in recent years that it was awefully deep, more than I had remembered it to be in past years. But as soon as I thought it I dismissed the thought. If you hadn't mentioned it I'd think I was nuts. I'm finding more things that are improving. I'm continually amazed by just how many things are conected to this disease.

[sonja69]

thanx all for your answers!!

@happygirl

thanx for your encouraging words, I need them today. I recently ordered 5 books on food intolerances and allergies and I learned a lot. it's so frustatrating all.

every test is 'fine' (but I did not make a parasite stool test, but other stool tests are always fine).

since I ate more gluten the last 5 weeks to get 'better' test results I never felt so bad.

I was bloated 24h/7 though I ate much less than before and had terribly headaches 24/7.

since last tuesday I am glutenfree, the headaches got weaker especially after taking an iron supplement (???), though my iron levels were 'fine'. okay, that will speak for glutenfree.

last saturday I had my best day and I prayed it will last, but sure it did not. it's always the same, I try something out (e.g. being fructosefree) it works one- some days and then everything is back.

today I am bloated more than ever, constipated and feeling bad not only because things are bad again. can't I have more than one or two days?? that make me confused thinking that it is not the gluten (I am not in denial, bread and such things, I do not care, I can live without them) I am lactosefree for about two years now (though my lactosetests were fine) and I am still confused, since one day I can eat lactose (frustration, or some party), some day I cannot have a loctosereduced yoghurt.

I thought about a food intolerance test, but since my body will make any test looking 'fine' I am unsure about that too, it's a lot of money (around 400 euros = >500 USD) and everything will turn out 'fine' and I am as smart as before....

sorry for the long post, I am so frustrated and I do not really have someone to talk about that. maybe I have to accept that I am bloated forever, my body always works against me (its kind of takes the mickey out of me). I belive, 3 days with only water will get me bloated... this is not a live. maybe its all imagination, but I cannot live with this 30 more years....

sorry, but thanx for your support, I will keep this in mind and hope to get better one day....

Sonja

[super-sally888]

Hi Sonya,

listen to your body. Your tests may still show something (the biopsies may show celiac or inflamation). My dr. said the endoscopy looked fine. But the biopsy showed chronic inflamation - don't know what he will make of that - haven't managed to get back to see him.

But the big thing will be how you feel. That will make up for everything. I am still getting into this diet thing but my energy has changed, my attitude has changed, I feel SO much better! I don't know if gluten is the whole answer, but definitely it is part of it.

Take care. Remember the only person you have to answer to on this is yourself.

Sally

[Guest nini]

initially a lot of us went through many up and down days, a period of withdrawal has been commonly reported. with the gluten-free diet you need to give it more than a couple of days to decide if it's helping or not, it's normal to feel better for a few days then backslide and have some terrible days, either you are withdrawing from the gluten or still getting accidentaly cross contamination. Lactose may be part of the puzzle too. you may have to initially eliminate both gluten and lactose, after about 6 months, try lactose again and see if it bothers you...

[sonja69]

thanx for answers again!

I read so much about all these intolerances I could write a book about it.

@nini

I am lactosefree for most of the time since summer 2004. if I am at some party I take Lactaid ultra. its just when I am really frustrated because nothing helps to keep this pregnant belly away then I give in to some milkchocolate because I think that problem will be with me forever.

I do not eat so much fructose food either, seldom fruits and high fructose vegetables. or sugared things...

I just eat gluten-free-oats, rice, some vegetables, eggs, chicken, fish, water, herbal tee, coffee and lactosefree milk. sometimes almonds, nuts and milkfree chocolate. thats my food, really plain also before the gluten-free diet.

I read in a book that if one eats the same foods every day, you are more prone to food allergies and intolerances, but I am afraid to try something new out.

yeah, feel poop today, maybe it was the 1/4 glass of fruitsmoothie yesterday, cannot figure it out, since 25g fructose on an empty stomach (selftest) did nothing to me, not even days after....

and cross contamination? was at home the whole weekend and I live alone (ok, my cat, but he is definitely gluten-free!

sorry about complaining! thanx for your help again...