Questions About Diagnosis

[LonelyWolf307]

All right, so long story time.

I'm currently 20 and have had GI problems for years. When I was 15-16 or so is when it started, I had a lot of pain when I ate, a lot of bloating, nausea, sometimes vomiting, etc. It caused a lot of problems just with eating. I've been tried on reglan, zofran, most of the anti-nausea meds along with things like prilosec, etc for "acid reflux" which was their initial diagnosis (it never felt like acid reflux though, it was a bloating sort of pain not a burning one). It went on for almost a year before I finally saw a GI about it. Pretty much the first thing the nurse practitioner I saw thought I was a suspected case of Celiac, but they ruled it out with the blood test. The GI nurse practitioner suggested I try a gluten-free diet anyway, and scheduled me for an upper GI with biopsy just to be sure. So I was on a gluten-free diet for a good month or two before we got a chance to do the upper GI, but my symptoms were all but resolved at that point. The biopsy came back negative, though they said they found a lot of very small ulcers in the upper portion of the small intestine and re-prescribed the antacids. They also did a stomach emptying study which came back fine. They told me that I could go off the gluten-free diet, I stayed on it for about 6 months just because I felt better like that, and then I gradually re-introduced a few things like oats, and the rare piece of bread and other things that were previously off-limits.

Now ever since re-introducing it I've had on-and-off problems with my GI tract. They've never been horrible, but I've also never been a big fan of most wheat products. I don't eat much for grains, and most of my gluten exposure is through things like soy sauce and things that have wheat as an additive but not a main ingredient. The symptoms are roughly the same, bloating, nausea, occasional vomiting (rare), that hungry-but-don't want to eat sort of feeling, you know? Recently it's gotten REALLY bad though, ever since my fiance moved in with me several months ago I've been eating a lot more wheat products because that's what he's used to eating and he makes french toast, etc a lot. It didn't really flare up or get bad until that point. It's pretty bad right now, I've gained around 10 lbs since he moved in in June (I'm only about 140 lbs, was 130, and 5'8", so 10 is a lot for me) and it's almost entirely abdomen as far as I can tell because my belly both looks and feels bloated 24/7, even if it's morning and I haven't eaten in 12+ hours. Eating is extremely uncomfortable and it's hard not to just avoid eating entirely at this point.

Now I have been stressed out the last month or so, so I thought it might be that, but I hadn't realized that Celiac had some other symptoms as well... My liver enzymes have pretty much always been elevated. The last time I had them checked my ALT was around 80 and my AST was around 200. I was evaluated for those of course but everything came back just fine so they weren't sure why mine were so high; I never drink and I don't have hepatitis or any problems with the liver and I'm not on any drugs that would elevate those enzymes (can't take NSAIDs and don't take anything else but birth control). My hematocrit and hemoglobin are pretty much always a bit lower than they should be (hematocrit around 35% and Hb around 10-11 on average), and my other blood cell counts are on the low end of normal. I've been treated for iron deficiency anemia a few times and the iron pills have been sorta effective but only brought my Hb up to around 12.5ish (barely high enough to donate blood) even after being on them for a month, which is odd because I eat a lot of meat, spinach and greens, etc and my diet isn't deficient in iron at all (and even when I try to eat more of those things it's ineffective).

I'm wondering how accurate the blood tests they use for Celiac are, and if it might be a good idea to re-try a gluten-free diet? I'm kind of at a loss for what else to do because this won't resolve. It started when I was about 15 and I'm now 20, and while it's waxed and waned I don't want to deal with it anymore. Should I bother to try to get re-tested even though they were negative last time, or should I attempt self-diagnosis if trying a gluten-free diet is effective in relieving symptoms? If it is am I stuck gluten-free for life??

Oh something else relevant - I have many bad allergies already so I wouldn't be entirely surprised at an autoimmune problem. My list of barely avoiding anaphylaxis-responses includes soaps, lotions, beestings, and MSG; I'm also extremely allergic to cats but I don't get the hives/throat swelling with them.

[cassP]

its unfortunate that u were told to go gluten free, and THEN later asked to do the endoscopy... That was a waste of your time and money. As far as the blood tests- false negatives do occur and many times they're hard to read and instead of really interpreting them- the docs just say "oh you're negative".

If u want to retest- u need to be eating at least 4 slices of bread worth of gluten a day for like 2 months to get an accurate test. Good luck deciding... And dont put it off for years like i did- this is your health and life

[Skylark]

The blood tests are estimated to have a 20% false negative rate. They are just not very good. If you have a lot of symptoms that appear when you eat wheat and go away when you don't, it sounds like you need to be on the gluten-free diet.

If you don't feel like you can stick to the diet for life, you will need to gluten yourself up really well, by eating the equivalent of 4 slices of bread for couple months. In studies, they often have people eat a full gluten diet for three months before doing an endoscopy. At that point, you have a better chance of a diagnosis.

I self-diagnosed, but even small amounts of gluten make me sick enough that sticking to the diet is not a big deal for me. It's worth it to be well, whether I'm actually celiac or not. (I suspect I am.)

[Mari]

It sure seems that something about gluten is causing problems so it is either more tests or just staying gluten free and having modified french toast - Udi's brand bread would probably do ok in soaking up the eggs and it tastes good too. Until you make up your mind about what to do next it will probably help to go on a low carb diet, take a supplement to make your stomach more acid (I use Betaine-HCl) and take digestive enzymes. This will starve the gut bacteria or yeasts which are producing the gas and bloating and digest the food eaten before the bacteria can grow in it. Check out the Gluten Syndrome website for more information about the problems gluten can cause. I had the genetic marker analysis at Enterolab.com - they offer other tests too. Prometheus Labs also can test your predisposition (risk) for developing Celiac Disease and non-celiac sprue. Metametrix Labs can test for any organisms which could be causing your problems and also for some intestinal dysfunctions, including a sensitive test for gluten antibodies.

Hope this helps.

[LonelyWolf307]

As an update, I've been following the gluten-free diet pretty much since I made this post. I've felt infinitely better, my stomach isn't distended anymore. Honestly I'm about 99% sure this is what my issue is, it's been a problem pretty much since I last stopped going gluten-free after being told I didn't need to.

I see the doctor next in late January - seeing if my ALT or AST levels have normalized will kinda confirm it in my mind. Either way it's most definitely worth it to stick to the diet if it's helping this much after like a week or two. An official diagnosis would be lovely so that doctors don't think I'm nuts but otherwise the only thing I need is "do this to feel better".

[Skylark]

I'm glad you're feeling better! Who cares what the doctors think? Besides, I've never been told I was nuts when I tell doctors that years of chronic diarrhea and gastritis went away when I stopped eating gluten.

[punkinrice]

I don't put much trust in the blood tests. Everyone in my family has tested negative on the blood tests, but positive on the biopsy. I tested negative for 13 years...and I put myself through hell and back over those 13 years, plus a very horrible experience with a gluten challenge for the month before the biopsy. To many of us, gluten is the equivalent of poison. I actually tell myself that when I walk into the bakery section of the grocery store "yummy smelling poison...hands off!"

If you want the diagnosis for a tax break on the cost of food, or need the diagnosis for some other reason, then getting a biopsy would be the way to go...don't bother with the blood tests (my opinion, anyway). If you don't need that doctor's seal of diagnosis, why bother hurting yourself if you know in your heart you are healthier without gluten???? Sending you hugs...I completely understand how you're feeling...in fact, most of us do. I can remember when I was in college, lying on the floor in the bathroom of my boyfriend's parents (who were kind enough to make a huge traditional Italian pasta dinner), sobbing because I was doubled over in pain. The doctor dismissed my symptoms and told me I had IBS and to increase the roughage in my diet with whole grains. Gluten intolerance and celiac disease is no fun...but there is an "easy" solution out there at the tip of your fork.