Is It Possible?

[emeraldeyes]

Hi, I'm not sure if I should be posting here without an official diagnosis, but I'm hoping to get some answers. This could get lengthy.

I've had some pretty severe symptoms over the past 9 months, and the doctors can't seem to figure it out. My symptoms actually mimic almost exactly those of an ulcer and/or gastritis, GERD, and IBS - burning stomach pain, loss of appetite, severe nausea, acid reflux/heartburn, bowel issues (alternating between softer than normal stools and constipation, but always with that uncomfortable urge to go, especially after eating), general weakness, depression and moodiness, gas (both kinds), moderate to severe dairy intolerance (depending on the day, which is odd), bad stomach pains after taking calcium supplements (even tums), feeling dehydrated even though I drink nothing but water, fatigue (especially after eating breads, pasta, crackers), and basically just misery. I can't work, I hardly made it to my college classes, and there are many days when I'm completely homebound either because I feel sick or I just don't have any energy. The fatigue/weakness, inability to heal bruising, and moodiness/depression got slightly better after I started taking a B complex but now it doesn't seem to help as much. I'm 25 and have always been generally healthy except for chronic sinus/ear problems and scoliosis. I also have generalized anxiety and panic disorders, and depression - all of which were under control until I got sick. My symptoms mostly appeared suddenly after what I assumed was food poisoning, but looking back on it has made me see that my digestive system has always had it's quirks. As a kid, I would go up to 2 weeks between BMs on a regular basis until I was about 9. I also had chronic stomach aches and nausea when I was in mid-late elementary school that they found no physical cause for, and they eventually subsided, although I've had a "sensitive stomach" ever since. I also had to take prescribed iron vitamins and eat iron-rich foods, though I don't remember if I was officially anemic. Also I've always been very underweight, despite a healthy appetite and good eating habits (the doctors put it to genetics and a fast metabolism). My dairy intolerance started around age 10 and seemed to come on gradually, but it was always pretty mild and very manageable until recently.

Okay, now that you know my history... I recently went in to the GI doctor and he did some bloodwork and an upper endoscopy with biopsy. The thing that got me thinking about Celiac disease was the fact that the antibody test got screwed up and I had to re-do it. I initially declined, thinking there was no way that was the problem. Then I started reading up on it, and realized that it seems to be a possibility. He gave me the bloodwork last week, and I'll get the results on monday. I'll have to wait another week for the biopsy results though, and I don't even know if he tested for celiac disease. The endoscopy showed no ulcer or gastritis (which shocked me) but it did show undigested food which made my doctor suspect gastroparesis. But I don't have a lot of the other symptoms of GP unless I take my Zegerid.

Anyway, this probably seems long and off-topic, but I'm just wondering if I'm wrong in thinking that it could potentially be Celiac disease, or is it a possibility? It seems like it would explain so much, and it's not that I WANT it to be celiac disease, but I feel like there's a strong chance and I just want a diagnosis so I can do what I need to do and go back to living a normal life. One thing that makes me curious is that I have definitely noticed that I can't handle certain types of bread at all, especially white bread, but other kinds (whole grain raspberry muffins from tim hortons come to mind) don't seem to make me nearly as sick. Is that something that's associated with celiac disease? Sorry if I sound completely ignorant... and thank you in advance for reading thru this whole thing and helping me out!

[schmenge]

First, you can certainly post without any diagnosis at all. Second, yes, your symptoms could be Celiac. Nothing against your doctor, but you might want to validate that s/he knows how to interpret the blood test. I got the gene from my grandmother and after I was diagnosed my mother decided she should get checked (turns out she had many of my symptoms). She had already gone gluten-free and said she felt much better and I told her to get back on the gluten before the blood test.

Anyway the test comes back and the doctor says she does not have Celiac. She was at a loss as she felt some much better when gluten-free and started feeling lousy again when back on gluten (seemed simple to me: get off the gluten). About a month later she was seeing another doctor for something and she mentioned all of this. he looked at the results and said that they clearly showed Celiac. The other doctor just didn't know what to look for (and has since been educated on this!).

Not that I would wish Celiac on anybody, buy hopefully whether Celiac or something else, you doctor will find the answer for you.

[emeraldeyes]

Well I got all my test results today - everything was normal. The blood tests were all fine/negative, and the biopsy showed "no abnormalities". I don't know if they tested specifically for Celiac, but I assume that it would show up as an "abnormality" on the biopsy, and I can't imagine that he wouldnt know how to read the bloodwork, although there are some pretty incompetent doctors out there. It seems I have all these physical symptoms which could easily be explained by celiac disease, but nothing physically wrong with me. I'm half wondering if I should get a 2nd opinion, but it seems like a waste of time. I still have to go in for a gastric emptying scan and a small bowel xray. I don't know what they're looking for with the xray, but I really don't think I have gastroparesis and if I do, then it's caused by something else.... I still think it was the severe anxiety I had before the endoscopy (*they* say it's not linked to anxiety, but the adrenaline rush can slow your digestive system... easily explaining why there would still be undigested apples in my stomach 14 hours later) Since I don't have the main symptoms of GP (such as always feeling full after eating small amounts), it's hard to consider it as a primary option. Besides that, it doesn't explain the majority of my symptoms.

So now the doctors are going to think that I'm some kind of hypochondriac, or that it's all related to my anxiety disorders. And I'm so sick of hearing that it's all in my head!

I'm glad your mom finally got her diagnosis, I hope both of you are doing well. I know from experience that it can get frustrating when incompetent doctors don't know what they're talking about. The first GI doc I saw actually told me I have an eating disorder and wouldn't consider any physical cause for my problems (without even looking at anything on my chart except my height/weight or asking me any questions other than my weight history!)

Does anyone have any ideas as to what I should do now, or am I just truly crazy to think that there's a physical cause for my symptoms? Would it be out of line to try going gluten free? Has anyone ever had success going gluten-free but still had normal test results showing that they didn't have celiac disease? Am I just an anxious hypochondriac who's grabbing at straws to explain supposedly imaginary symptoms?

Sorry if I sound bitter or angry, I don't mean to. I'm just so frustrated!

[schmenge]

It must be frustrating to think the results will bring and answer and then they do not. It is certainly possible to still have Celiac and not have it show up; many people are ,unfortunately, misdiagnosed for years. You might want to ask if they specifically checked for Celiac. Your body does not need gluten so the only harm in going gluten-free is that it would mean that you could not have future blood tests to determine Celiac. OTOH, if you go gluten-free and your symptoms abate then that's a good thing!

[ang1e0251]

I don't know if I have the answer you want to hear. I dx'd myself through an elimination diet. I didn't do any testing at all. So how I would have tested, who knows? I refuse to eat gluten again to find out.

No one has to dx a gluten free diet for you to try it. You know your body better than anyone else. You know something is wrong and you have been given no concrete answers. The diet is a healthy one for you to follow. If you keep a food/ symptom diary, you will soon know if the diet is helping you. Most of us eliminate dairy at the same time. You may be able to eat dairy again later.

I'm just saying it is easy to try. You don't have to take drugs or undergo chemo therapy, merely stop eating gluten. If you don't benefit, you'll know. If you do, what a gift you have given yourself.

[pele]

I suggest that you get paper copies of all of your test results and read them yourself.

That said, you also should know that current testing is very insensitive, that is, many cases of celiac are missed. One study did bloodwork on known celiacs and the lab missed about 70% of them, an extremely high rate of false negatives. Conversely, false positives are virutally unknown.

Additionally, many people who have found that they are gluten intolerant may not have celiac disease. Many of us here on the board do not have a doctor's dx but know we have serious gluten-related issues.

I highly recommend you try a gluten free diet and see how you feel. You don't need a doctor's permission to do this. Start with simple, unprocessed foods that are naturally gluten-free.

Give yourself a really happy new year. Best wishes!

[lizard00]

I am echoing the previous poster. Get your blood test results. You'd be surprised at how many doctors really don't know how to read the celiac panel results. You can post them here, and someone will be able to help you.

Testing negative doesn't mean you don't have celiac. They are definitely not as sensitive as we would like them to be, which I'm sure contributes to the 98% or so of undiagnosed celiacs. You could pursue a second opinion, especially if they don't find anything.

And if that doesn't work, try gluten-free for a month or two. See if you notice any changes. You don't have to have a doctor's permission to change your diet.

[RollingAlong]

Please post your test results. The folks here have gobs of experience with those.

All of my spouse's tests were negative, except for Enterolab, which is its own brand of controversial.

He's gluten-free/CF and feels so much better. The diet is the ultimate test. I don't think he would ever have considered trying dairy free without the input from Enterolab, but he would have tried gluten-free without it.

Some people need tests and/or a diagnosis in the short run to make the necessary changes and some people need them in the long run to be happy with their decision. The hard part is figuring out which group you're in.

That said, I think it is very important to try for a proper diagnosis, even a gold standard one if at all possible. This is just my opinion. The reason is that you will have a baseline, which, hopefully you will never need.... Also, the lack of a diagnosis will come up every time you interface with the medical establishment and you want say, a gluten-free prescription, or need a gluten-free diet if you should happen to be hospitalized. The average doc visit is about 12 minutes long, you don't want to waste any of it explaining that gluten-free is not a "fad" diet for you.

[nora-n]

Hi, get a copy of your tests, at least to see what tests were done. I know from thyroid tests that even test results within normal , can be abnormal in reality.

My daughter got an official diagnosis of celiac with negative tests and biopsy.

nora

[GFLady]

I don't know if I have the answer you want to hear. I dx'd myself through an elimination diet. I didn't do any testing at all. So how I would have tested, who knows? I refuse to eat gluten again to find out.

That is exactly what I started to do too!!! I feel so much better. But I found that the elimination diet didn`t answer all my questions, becasue sometimes sympthomes come hours or a couple days later. So I didn`t know what caused it. I have several food allergies, so it is hard to diagnose. I am looking for a test, that tests everything. Is there anything like that out there? I have heard of a stool test for celiac testing, where you don`t have to go back to gluten to have the results. I will not go back to gluten just for the testing, it would really be a pain for me!! Any ideas?

[emeraldeyes]

I called my GI doc's office and the nurse confirmed that my bloodwork was all within the normal range and that the biopsy "showed no signs of celiac sprue". But she did offer to mail my test results to me. I'll post them as soon as I get them!

What gets me is that the other nurse (who works for my previous gastroenterologist) told me that there were minor variances in my first round of bloodwork, though she didn't tell me which test, only that it was "nothing to worry about". And on this round of tests, I had protein in my urine (caused apparently by not eating before the urinalysis) and she said something about a slightly elevated white blood cell count, though no infection was shown so that was also "nothing to worry about". I'm not fretting about it but why would they even bring it up if it was really nothing? Wouldn't they want to look into anything that fell even slightly outside of normal, especially if there's no concrete diagnosis at this point?

I haven't gone gluten-free yet, just in case I need to do more tests. If this really is the problem, I'd like to get the official diagnosis since my husband and I are trying to conceive (for 3 long years now, but that's a whole other topic) and since celiac disease is genetic, I'd want to know if it's necessary to get them tested for it. (BTW, I know that infertility can be a symptom of celiac disease, but my husband is the abnormal one in this case, so I don't consider that a potential symptom for me.)

It's good to hear that I'm not crazy for thinking that the test could've been a false negative. Is there some reason why the risk of a false neg. is so high? Does it depend on the amount of damage that has been done? Is the damage always visible in the endoscopy? I only ask because my GI doc told me he would only do a biopsy *if he saw a reason for it* and so I imagine he must have suspected celiac disease for some reason since he obviously tested specifically for it. Of course this is something I'll have to ask him, but you probably all know how "easy" it is to get in touch with a specialist! I'd love to talk more in depth about what he saw in the endoscopy, but apparently that's not an option yet.

Anyway, I'm rambling again. Thank you all for your input and support! I should be getting my results within the next few days so hopefully someone can help me figure out if they missed something or if it's worth taking them to a different doctor to get another professional opinion.

Have a great new year!

[Jan Gehrman]

Hi All, I could really use some help with knowing what is wrong with me. Here is what has happened so far....I had a cold for eight days which lead to diaherra. I have had diaherra for 5 weeks. After 3 weeks I went to my family doctor. He ordered a blood test for white and red blood counts, liver etc. He also said to get a colonoscopy. The blood tests showed high liver enzymes. I went to a gastro doctor who put me on bentyl, benefiber and immodium. He scoped both top and bottom and found inflamation in the colon which is microscopic colitis and possible celiac sprue disease. The scope showed inflammation in two spots. He order the blood work up for celiac disease which I had done yesterday. He told me to wait before going gluten free. I also have heartburn, feeling tired and weak, and not myself at all. I have pain in my lower area and also up higher in my stomach, and sometimes it feels like someone is squeezing my intestines. I have diaherra right after I eat. My stomach is bloated with lots of gas. In the morning my stomach is flat and then throughout the day I get bloated. Usually, I am going all day and now I just want to rest. Does this sound like Celiac disease? Please help. Thanks, Jan

[ang1e0251]

Those symptoms sound oh so familier, Jan. It certainly could be celiac disease or gluten intolerance. Sounds at least like your dr knows what to look for. So many doc's don't. See what the other test results are but the positive biopsy sounds like the dx you need. Blood tests often give false negatives.

You could try the diet even if your bloods tests are negative. Wait to see the results first though.

[nora-n]

emeraldeyes, infertility is often a typical issue in undiagnosed celiac.

It should go away after going gluten-free.

So I see it would be important for you to get diagnosed so you can know for sure and go gluten-free.

A diagnosis would also help you when dealing with family members and others who try to tell you it is all in your head and a little gluten cannot hurt so much.

nora

[pele]

It's good to hear that I'm not crazy for thinking that the test could've been a false negative. Is there some reason why the risk of a false neg. is so high?

If you do a lot of reading on this site, you will find a lot of frustration with celiac tests and with doctors.

There is currently no drug treatment for celiac. The only treatment is a gluten free diet. Thus, no pharrma reps are hammering at doctors' doors reminding them to diagnose celiac and get their patients on a proftable drug. Plus, many doctors think a gluten-free diet will ruin a person's quality of life and do not want to make a diagnosis of celiac.