Subscribe to FREE Celiac.com email alerts
vegan lisa's Activity
vegan lisa added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsFood Diary... Is My Plan Reasonable?Hi! I've been struggling for a few years now with stomach pain and other celiac-like symptoms (joint pain, early menopause, brain fog). I've had negative blood work and a negative biopsy (May - June 2010). I went gluten free, just to try it, and it really helped. I'd say I'm 90% better, but not 100%. I also can't eat apples and a few other foods. I have a "fancy" new GI doc who seems committed to finding a cause for my symptoms.
The first few things he suggested all made me worse, including a food challenge for apples and wheat. I was so sick from the wheat challenge that I didn't try any other foods and just gave up and went back to my very restricted diet (in my opinion it's restricted... I still eat soy, though). It took me 2 weeks to get back to "ok" after 4 day challenge that worked up to 1 full serving on day 4.
Now fancy new GI doc wants me to keep a food diary for 6 weeks, documenting all my food and symptoms, and then to go back and see him. I asked the nurse who called with these instructions if I was supposed eat the food that make me sick and document that, or eat the foods that keep me well and document that. The nurse didn't know and said that it was up to me.
So here is my plan: eat foods that make me well, and then do a short (maybe 1 meal) challenge and document the results. I have some time off work in May, and the work I have to do when I'm at work is really minimal during that time, so this is manageable.
Does this sound like it would be helpful to the doc? For what it's worth, he does believe me that these foods make me sick, and it's possible he wants to document something before diagnosing "non-celiac gluten intollerance", which seems to be his plan. On the other hand, could it be something else I don't see? Soy, corn, chocolate? Is there any chance doctor going to be able to help? I guess I'll give it this one last try...
Any advice is really welcome. I don't really know how to go about the food diary. I have each page split so one column is everything I eat and the other is a list of symptoms. Any other tips? Suggestions? BTDT stories?
Thanks for the reassurance and support!!
- 1 reply
- 902 views
vegan lisa added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsDermatitis HerpetiformisHi,
I have a skin "rash" on my stomach. (It isn't a rash, more like a handful of super itchy/stinging spots that look like chicken pox or small cold sores on my stomach that burst quickly and scab over.) It's been coming and going for at least 10 years, and for about the same amount of time that I had joint pain. The joint pain went away when I gave up gluten, and came back with a vengeance when I challenged gluten. The rash improved off gluten, but wasn't cured. It worsened somewhat when I challenged gluten, but it wasn't as obvious as the joint pain since the rash comes and goes anyway.
I've thought about being tested for DH, but I just don't know how to go about it. The dermatologists in the area are well known for their incompetence and poor ethical behavior, so I'd have to find a derm one to two hours away to find a competent one. Is competent good enough, or do I need a really fabulous dermatologist for this? Plus, the rash does come and go. Sometimes the sores stick around for 2 or 3 weeks, but often they heal quickly and suddenly. So if I go to a fancy dermatologist at a University hospital, it's a 2 hour drive, probably a 2 month wait for an appointment, and then I may or may not have symptoms?
It's a bit overwhelming, and I'd like some more information before I give up on it!
Also, do I need to be eating gluten for DH to be diagnosed? If I'm off gluten, the antibodies won't be present, right?
- 7 replies
- 1,544 views
vegan lisa added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsGluten ChallengeQuick History: I have had over a year of stomach pain. The GI issues (except for stomach pain) have mostly healed and they turned out to be a reaction to a medication, and were NOT food related. I've had a celiac blood panel done, which was negative (actually 0, not just below threshold of a positive test). My total IgA was normal. I had an EGD and the three biopsies that were taken have been reviewed by two doctors and show no signs of celiac.
I have mild reflux, which I am confident was caused by the medication I took for 7 months last year.
Both my regular doctor and the GI were sure I had celiac. I was sure too, as I have/had many of those vague secondary symptoms (early menopause, joint pain, brain fog) in addition to this sharp stomach pain.
Last fall, after all of the negative tests and after being "dismissed" by my first GI doctor, I tried going gluten free. I had been gluten free since late August or so, and many symptoms improved, notably the stomach pain and joint pain.
I decided that the life-long gluten free decision was a big one. Also, while I felt mostly better, I did not feel all better (maybe reflux causing problems still?) and at my primary doctors advice I went to see a fancy GI specialist at a University hospital in my state. Among other things, he suggested a gluten challenge. I started slowly reintroducing gluten last week and nothing dramatic happened at first, but slowly I'm noticing things:
*stomach pain is back, but is very mild. I would never seek a doctor for this pain that I can totally ignore.
*joint pain is back. Total bummer, as I hadn't really noticed it was gone until last night when it really hit. It always bothered me in the evening and I used to blame it on cheap shoes without enough cushioning.
*I've had a headache for 3 days.
*Brain fog is back. I can't think things through clearly. But then, maybe I'm distracted and overwhelmed by the idea of the gluten challenge and THAT's why I'm unfocused?
*I'm exhausted... my skin feels heavy, and it feels like it takes extra muscles to breath. BUT, I'm still making it to exercise, making it to work, so it's not like it's real muscle weakness or actual breathing issues. I'm also sleeping fairly normally.
I can explain away a lot of these symptoms individually, but taken altogether I am feeling pretty crabby.
I don't know when to call the doctor to discuss it, or if the doctor even would have anything to say at this point.
Do these sound like symptoms that would be enough for you to call off a challenge? Especially in light of my thoroughly negative tests? Is it worth giving it another week or two?
In addition, I've failed my apple challenge. Not only did it make my reflux worse, but I was a wreck -- I made about 4 huge mistakes at work in the 24 hours after. It's hard to imagine an apple could do that to a person, but it was my 3rd apple challenge with the same result. Go figure.
Thanks for your thoughts. Mine are clouded at the moment!! I really wish I just had a ticker tape receipt system that would give me print out what (if anything) is wrong with me!
- 6 replies
- 1,014 views
vegan lisa added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsWhere To Go From Here? I'm Baffled!I'm totally baffled as to what to even discuss with my doctor. Here's a short summary of where I've been:
*Misdiagnosed with gastritis after suffering from stomach pain, which at the time I thought was heartburn. I know now that sharp pain under the left ribcage isn't heartburn, but that's what I thought it was back then. I was "treated" with nexium and diet (no spicy foods, no alcohol, no fried foods, etc). Got much, much worse. Regularly had D, black, tarry, loose stools, more pain. Joint pain continued, hormone issues continued (early menopause symptoms).
*After 6 months of suffering, I was referred to a GI who did blood testing (3 tests plus total IgA), an endoscopy with 3 biopsies, a CT scan, and a colonoscopy. All were normal. Blood results were 0. The biopsies were totally clear. However, at this point I HAD developed actual heartburn!
*I quit taking nexium. Aside from the pain in my stomach and the D for 3 hours most mornings, joint pain and menopause stuff, the rest went away. No more oily stools, NO MORE Heartburn!! Bad Nexium!
*My GI doctor said "You do not have any of the illness which I treat." and dismissed me as a patient.
*At this point, I took matters into my own hands. I quit eating any foods I thought were suspicious: gluten, apples, and honey. I felt 90% better. NO joint pain, no heartburn, but still had occasional mild stomach pain, an occasional D that I couldn't be sure was from cross contamination or some other food I had eaten. I had a few slip-ups that I was aware of, but it's so hard to draw that direct connection between the oatmeal I ate and the 4 days of D, brain fog and fatigue. Maybe I was just fighting some virus?
*So my regular doctor referred me to a GI specialist at a big research hospital at a University a few hours from where I live. He looked at my biopsy slides again, and said there was mild inflammation in my stomach and in the join of the esophagus and stomach. (Duh, the nexium I was taking gave me heartburn!) For what it's worth, he did seem very knowledgeable about celiac and non-celiac gluten sensitivity/intollerance. He really thinks celiac is unlikely. He decides that my pain might be from the stomach acid and puts me on Zantac and gives me the go ahead to eat whatever I want. This was last week.
I've been taking Zantac for 4 days, and I reintroduced apples (still no honey or gluten). I feel awful. I have heartburn every single minute. I have that horrible taste in my mouth, and my whole chest hurts. I've had a constant mild headache (known side effect). My stools are getting dark and oily again. The doctor's idea was that the histamine blocker in Zantac would help me reintroduce foods, but so far, not good with apples.
So what do I do now?? Do I try wheat?? It seems so hard to draw any direct connections between symptoms and what I eat. There are too many variables! How long do I give the zantac? I've given up on apples to see if I feel better, and I don't yet. But, the apple thing seems really weird, right? I don't have problems with other high-fructose foods. Nor do I have much burping (except when I'm on a heartburn med!).
The new GI doc also wants to re-do the EGD, but what else could he be looking for? The meds that make people "forget" don't work for me. I remember every thing from my first EGD. I really don't want to put myself through that in a hospital 2 hours from home to get more inconclusive results, you know?
Any ideas/advice is welcome. I really don't know what to do, or if it's possible to make any progress with or without a doctor. There aren't any tests left to run! My food diary doesn't seem to be telling me much, either.
Thanks for reading my long saga!
- 6 replies
- 759 views