I Really, Really Need Help, So Confused. :(

[confusedgirl]

This is extremely long but I'm DESPERATE for help, please read

Okay so I'll try to make this as short as possible. About a year ago I was looking all over the internet to try to find out why in the world every time I eat pizza I get severe stomach cramping lasting at least a day or two. I am lactose intolerant, and was born that way, but pizza never used to be a problem for me as I can eat cheese in moderate amounts without having a reaction, and the bad reactions had just been going on for maybe a couple years or so and were getting progressively worse. I found gluten intolerance, and from there found celiac disease. I had been told I "probably have IBS" by doctors but why would I have everything else with it? Supposedly celiacs are misdiagnosed with IBS fairly often?

When I read about celiac disease I was shocked and I seriously felt like I had an epiphany- I had been having BAD problems with mouth ulcers for months and months. I've gotten them my whole life, but usually spaced out a bit and one at a time. The past year or so I had been literally getting 6 at a time, really bad ones, my entire mouth covered, and there was no relief because as soon as they would heal I would break out again. No matter how often I brushed my teeth or what toothpaste I used, I tried everything! I even stopped eating tomatoes etc etc. Well I stopped eating gluten to see if maybe that did help and I could feel a difference in my stomach within a day or two, it was almost like it felt "clean" and not all crappy and weighed down like it always had for the past 5 years. But we didn't know much about the gluten free thing and I just ended up eating normally again after a week.

Fast forward and I'm having SEVERE nausea nonstop, and every time I eat I feel severe nausea and am on the verge of throwing up after every single meal, sometimes with "D" along with it but not always. We could not figure out what was wrong with me, I was losing weight like crazy, I am 5'7" and I had weighed 110, but I went down to about 89, 90 pounds and literally looked like a skeleton and I looked and felt like I was dying, and I thought for sure I was. I ended up in the ER 4 times within only about 2 months because I was so nauseas I could not eat anything and I would go to weeks without eating because I was so sick and every time I ate it made it so much worse. And FATIGUE, fatigue omg I have been SO tired the past few years, and I mean severely, I could sleep for days because I was so weak and tired. And I had insomnia for a while too despite how tired I was. But anyway, I ended up on IVs and they could not figure out what was wrong with me, they were baffled. So time after time I went home without an answer/diagnosis. I was dizzy, lightheaded, having heart palpitations like crazy(which I had gotten for years but they never knew why) and I thought for sure I was dying. So as I spent days laying in bed, sick as all you know what, I knew something was seriously wrong.

I have had depression my whole life, but ever since I started getting so sick it was getting even worse and it was terrible. I had been having brain fog for a couple years, and for the past couple years I just felt really off and really "not well" and we never got answers why. I've been tested for diabetes, thyroid problems, and had the full bloodwork done, everything imaginable SO many times, time after time again everything came out just fine and they had no clue what was happening. Well, a family friend (who is cceliac) was worried about me and she told my parents that I'm experiencing the same things she did before she was diagnosed and that she thinks I have it. I had nothing else to lose, I was starving to death and was too weak to even stand up or move, but I tried the diet and went full on with it and was extremely strict. Slowly I was able to start eating, and stretching my stomach out enough to hold more than a crumb. For the first time in a half a year I did not feel like I was going to barf every time I ate, and I honestly forgot how that felt, it was so weird to eat and not get sick from it. Within a day or two (like the time before) my stomach felt "clean" almost "fresh" idk how to describe it, it just did not feel "polluted" or bloated like before, I had been chronically bloated for years and just figured it was normal. But I started doing better and better, and I was almost back to my old self again. Everyone noticed a difference, my parents, sister, all my co-workers and my boss, everyone said that they had been really worried because I was deteriorating and I was like a zombie, but now I had energy and felt "normal" again and it was wonderful.

Well I started seeing a few weeks ago, and while looking through my medical history she pointed out all of these "mystery" things that had been wrong that i never got an answer to and she kept saying "this is from celiac, this is from celiac, this is from celiac. I really think you figured it out and it fits, I think that was your problem." But she wanted to give me the gluten challenge (I had been gluten free for 2 months) so that I could get the testing done. Well, I tried but by the time I got 2 or 3 days into it I was so sick I could not stand it anymore, I was turning into the dying person I was before, I dropped the weight (I went from 89 pounds to about 108 or so, which was HARD to do and took nonstop eating, eating once an hour) and I dropped back down and was very frail again and was getting sick with D and nausea, dizziness, heart palpitations, brain fog, and was very depressed and emotional. The bloated feeling came back in my stomach and I was getting serious abdominal pains and cramps, and a couple days later developed two mouth ulcers. I told them that I couldn't do it anymore because I was having so many health issues already and they gave me the go ahead to get the bloodwork. Well, I got it and I started eating gluten-free again.

Now, almost 2 weeks later, I am feeling amazing, AMAZING I have not felt this good in a really, really long time. I had switched out my lipstick that I found out was unsafe and EVERY thing I could think of and all the malaise I was getting off and on has finally gone away. However, I am SO confused because I got a call from the doctor just now, saying my blood test results were negative, and I feel like crying so much right now, because I feel so hopeless. PLEASE help me, I don't know what else to do. Celiac is the only thing that would explain all these things that have been happening to me for the past couple years, and I am feeling really scared right now. Please help me I don't know what to do...

The symptoms that fit celiac that I've experienced a lot are: bloating, abdominal cramps, brain fog, mouth ulcers, pallor, malaise, muscle weakness and wasting, digestive problems, nausea, fatigue, difficulty gaining any weight, menstrual problems, joint pain, constant headaches, difficulty thinking and concentrating, everything feels like it's a dream or something, nothing feels like real life idk how to describe it... I just never feel alive anymore (except for when I've stopped eating gluten), stomach grumbling, gas, panic attacks, voracious appetite (I always ate like a COW and no matter how much I ate I was never full and never could gain any weight) leg tingling and numbness, dizziness and head rush, bruising easily, depression, I grew up the shortest skinniest girl in my class and was always very tiny, but had a growth spurt at the very end of high school. I did not get my period until I was in high school, literally almost every symptom applies to me and it fits me to a T and I don't understand how this could 10000% explain ALL these problems that I've had that doctors have always been baffled about, and now find that it may not even be right? I know it is possible to get negative blood results especially if you follow a gluten-free diet before testing/doing the gluten challenge but I am seriously confused.

Also I am Irish and am a redhead and I know that Irish people have the highest rate of celiac, so that makes sense too. idk?

HELP :'(

[GlutenFreeManna]

No need to be confused. Listen to what your body is telling you and stay gluten-free! Your dr was wise to recognise all the things related to celiac that cleared up due to your gluten-free diet. It's too bad that she wanted you to re-poison yourself for testing. Many of us are in the same position and won't ever get an "official" diagnosis via positive bloodwork. Your good health is more important than that piece of paper (which could still end up negative after you make yourself gravely ill again eating gluten). Welcome to the board!

[sa1937]

It sounds like your body has given you the answer that doctors were unable to. If you've been gluten-free, it's entirely possible that you would come up with a negative celiac panel. False negatives are fairly common. If I were you, I'd go gluten-free and stay that way as you don't need a doctor's permission as to what to eat.

Considering your severe symptoms while ingesting gluten, I cannot imagine wanting to do a gluten challenge to try and come up with a positive test result knowing that even then the results might be negative.

If you can go strictly gluten-free, is there any particular reason you need a diagnosis? There are a number of people on this forum who are self-diagnosed.

[confusedgirl]

Thanks for the answers so far you guys, I was just about in tears because I'm scared that somehow I have some messed up mystery disease and don't know what it is if they're telling me I'm not celiac... The relief I have felt by first finding something that fit SO perfectly, then the results it gave me was amazing, and being told that it's not that is such a low blow, you know what I mean? That's just it, my mom and I are pretty adamant that this has to be the problem, and I know I'm sticking to this diet no matter what. It's just that the doctor "has to verify" even though honestly they can't make me do anything. I know my body. I guess it's the fear that if I somehow have something else then I'm both unaware of it and feel guilty "lying" and saying I'm celiac. But honestly I have no idea what else it could be considering it's so fitting and the results of a gluten-free diet have such a dramatic impact on me. And it's not the placebo effect either because there was this stuff i kept drinking because I thought it was safe a couple months ago and every time I drank it I got a terrible migraine and didn't even know until I ended up checking that it was that. Aaaahh :/

Thanks for the welcome btw! I have actually looked at this site a lot during the past several months and every time I wonder if something is truly safe this is where I look because someone always asked already. Today I FINALLY made an account and posted because I couldn't bear it any longer! Other than the lady my mom knows we do not know any celiacs, my aunt may have it imo bc shes had similar problems as I have but none of us ever got tested for that stuff before. I don't have any friends who are celiac so I feel really alone sometimes and need support I guess.

[AVR1962]

Unfortunately testing is not real dependable. You could go back on gluten, retest, results could go either way.....a year later try it again and result may go the opposite direction.

You have the answer. Keep your health and save yourself the agony!

[sa1937]

Thanks for the answers so far you guys, I was just about in tears because I'm scared that somehow I have some messed up mystery disease and don't know what it is if they're telling me I'm not celiac... The relief I have felt by first finding something that fit SO perfectly, then the results it gave me was amazing, and being told that it's not that is such a low blow, you know what I mean? That's just it, my mom and I are pretty adamant that this has to be the problem, and I know I'm sticking to this diet no matter what. It's just that the doctor "has to verify" even though honestly they can't make me do anything. I know my body. I guess it's the fear that if I somehow have something else then I'm both unaware of it and feel guilty "lying" and saying I'm celiac. But honestly I have no idea what else it could be considering it's so fitting and the results of a gluten-free diet have such a dramatic impact on me. And it's not the placebo effect either because there was this stuff i kept drinking because I thought it was safe a couple months ago and every time I drank it I got a terrible migraine and didn't even know until I ended up checking that it was that. Aaaahh :/

I'd say give a gluten-free diet a strict 3-month trial and see how you feel. If there's anything else wrong with you, going gluten-free will not prevent your doctors from testing for other things. (Doctors can be pretty clueless). That said, I wouldn't be surprised if you've already found your answer. We do tend to worry not knowing especially if we feel like death warmed over.

[confusedgirl]

Thanks! Yeah that's true, yeah I feel like this is the answer and I do need to spare my health which is why I could only do the challenge for like 2 days, it was unbearable! That's what I'm doing now too is the strict gluten free diet like before, and this time I changed my lipstick too and am not wearing lotions like before and it's better than ever, I finally feel amazing these past couple days, after finally healing from that poisoning a couple weeks ago. It's shocking how big of a difference it makes. On gluten it literally feels like you're dying! I thought for sure I was too, very scary times.

[nora-n]

Your tests are negative because you have been gluten free for a while.

You had dramatic symptom improvement off gluten,and dramatic symptoms back on gluten, and some people get the diagnosis after a gene test.

There is also another test, where they take biopsy samples of the gut, and look at it immunologically, incubate it with gluten and test if the sample makes antibodies. Someone posted Dr. Greene did that with her. (she had been gluten-free for years but developed some other issues so they were trying to figure out if she really was celiac in the first place)