Why Do I Feel So Bad?

[student314]

I've been gluten free for 6 days now (it's a personal test--I haven't actually been diagnosed). The first day I felt no difference, but since the second day I've been tired and extremely anxious. For the past two days, I've had that achy exhausted feeling right before you get really sick, but I haven't gotten sick. I just don't feel well at all...My appetite is gone so I know I'm not eating nearly enough. Is it possible I'm not getting enough nutrients and am already feeling the effects? Milk has actually been irritating my stomach for the past couple of days (uncomfortable pressure in my stomach after eating milk and cereal). I'm going to stop eating chocolate as my anxiety seems to be a lot worse after eating it and I'm not craving sweets anymore. My inflammation (hidradenitis suppurativa and facial acne) have actually gotten WORSE as well over the past few days. 

[shadowicewolf]

Gluten withdrawl. It isn't fun at all.

[WinterSong]

Yup. I'll go away soon. 

[nvsmom]

Ditto. I felt worse for about 2 weeks, and then I started to improve.  

 

Have you thought about being tested before going gluten-free? If you want to test in the future you will need to do a gluten challenge of approximately two months (about 2 slices of bread per day). If gluten is an issue for you, that's a long time to feel badly... and then go through withdrawal again. Perhaps testing now, after a week or so back on gluten, might be a good idea.

 

Best wishes.

[student314]

It's good to hear that this wasn't out of the ordinary

 

I've tried to get two doctors now to test me, but they just laughed me off. One, who I had just been referred to and knew NOTHING about me other than I had been having diarrhea and anxiety, almost angrily asked me "WHO told you that?" when I mentioned gluten. She just said matter-of-factly, "You don't have celiac." And that was the end of it. If there's improvement within the next month or two, I'm going to my doctor at home and I'll tell him I cut gluten out and there was improvement and maybe THAT will convince him to actually test me. I realize that I'll have to do a challenge, but I couldn't just keep sitting around and paying for doctors and waiting for one of them to believe me enough to order tests. This was seriously starting to interfere with my life and classes. And if it's not gluten, I'll go down a different road for answers.

[nvsmom]

Have you considered a home test? In Canada, I ordered a Biocard test (tTG IgA) which is pretty good (not as accurate as the major labs). I took my faint negative to my doctor and he ordered tests to confirm it. It's about a $50-100.

 

Hang in there. A lot of us have been thought of as hypochondriacs by our doctors... for many many years.

[WinterSong]

It's good to hear that this wasn't out of the ordinary

 

I've tried to get two doctors now to test me, but they just laughed me off. One, who I had just been referred to and knew NOTHING about me other than I had been having diarrhea and anxiety, almost angrily asked me "WHO told you that?" when I mentioned gluten. She just said matter-of-factly, "You don't have celiac." And that was the end of it. If there's improvement within the next month or two, I'm going to my doctor at home and I'll tell him I cut gluten out and there was improvement and maybe THAT will convince him to actually test me. I realize that I'll have to do a challenge, but I couldn't just keep sitting around and paying for doctors and waiting for one of them to believe me enough to order tests. This was seriously starting to interfere with my life and classes. And if it's not gluten, I'll go down a different road for answers.

 

I'm sorry that you had that experience with your doctor. Reading that makes me really upset for you. Because of the wide range of symptoms (and the fact that no symptoms is a symptom), you can never say to someone "you don't have Celiac" without testing them. Those two doctors are idiots. Don't go back to either one of them.

 

And good for you for taking your health into your own hands. 

 

I was lucky that when I walked into my doctor's office and said, "I think I have Celiac Disease," he ordered up a test for me right away. If I were in your boat, I'd be doing exactly what you're doing. 

[NoGlutenCooties]

When I first asked my doctor to do the blood test for the antibodies she asked me "Why on earth would you want that?" - then I told her my uncle has celiac and she immediately ordered the test, even though I wasn't having any symptoms myself (other than early osteopenia).  She hinted that if it weren't for the family-history, the health insurance would not have covered it.  After seeing the bill from the lab I can see why.  The regular panel plus the two celiac-related tests, plus the Vitamin D level test came to almost $900.  (Insurance paid for all but $80 of it.)

 

I've also read that many with gluten sensitivity and/or celiac often have to give up dairy when they first go gluten-free.  After awhile they are able to reintroduce it into their diet.

 

There is also a chance that you aren't just experiencing gluten withdrawal, but are also having a bit of carb and/or sugar withdrawal, depending on what gluten-containing food you were normally eating.  Try making sure you are getting enough gluten-free carbs in your diet.  I've also found that I feel much better if I get a good source of protein first thing in the morning.  I use Designer Whey brand protein powder (French Vanilla).  It's certified gluten free, easily digested, well tolerated by folks sensitive to dairy, does not contain soy, and has 18 grams of protein.  Beware some of the other flavors though - they are higher suger and lower protein.

[student314]

I had no idea that there were at home tests. That would definitely be something to possibly look into. 

 

I've made sure to eat carbs. I did the Atkins diet a few years ago for a week and a half or so and had the "Atkins Flu", which was a thousand times worse than what I've dealt with for the past several days, all the way through it. I was exhausted all through it and was literally gagging down food. I finally had to stop when I ended up with a migraine with an aura (my first EVER aura). I just couldn't deal with the no/low carbs. It works well for some people...I just ended up really sick. I figured there were healthy ways to still eat carbs. So to avoid that whole situation, I've been sure to eat carbohydrates.

 

I'm becoming more and more sensitive to dairy the longer I cut out the gluten. I had a bowl of cereal this morning and I'm already nauseous. So that might have to go. We have "breakfast for dinner" parties at my apartment sometimes and last night I tried making gluten free pancakes. They were pretty good. But half way through eating dinner last night, I started feeling sick like I would after eating gluteny carb-loaded meals. So there was either something in the sausage or bacon I ate (I trusted my roommate who said it was just plain sausage from a family farm and they don't put any fillers or anything in it), there was some contamination from the skillet I used even though it was cleaned very well and they let me make my pancakes first or the fact that there was flour flying everywhere in the kitchen from everyone else's pancakes, OR I'm just reacting to something else. All I know is that I haven't had that severe of stomach symptoms since I cut out the gluten a week ago.

 

This is oh so complicated sometimes...Especially without any diagnosis either way. 

[mommy2krj]

Hugs to you! It's complicated even with a diagnosis sometimes. Ah, life. So much fun sometimes!

The sausages could have been the culprit. We only eat one brand of sausages here for that reason. That, and I'm picky and find that they're the only ones I like (and that was before we went gluten free!) and they just happened to be gluten free so I definitely lucked out there! The flour flying around from the others making pancakes probably didn't help either.

 

We were doing ok with dairy, so I thought....but then we had little guy's follow up appointment and we have him on a restricted dairy intake. It doesn't seem like he has to give it all up completely...just not have as much of it. The tummy aches seem to have disappeared so that's a plus. Now he just gets a small 4oz glass of milk with one meal and some small amounts of cheese here and there through the week. Before it was milk with every meal and loads more cheese. Haven't cut it out of the things that are cooked/baked with it....but I will if I have to in the future.

 

Hopefully you can take your improvement on the gluten free diet back to your doctor and make them see the error of their ways. Good luck!

[student314]

Wow. I'm really starting to think this has GOT to be gluten. We ordered in at-home celiac test. I know it's a shot in the dark, but a shot in the dark is still a shot. So I started eating gluten again. Two nights ago I ate two pieces of plain cheap wheat bread that I had left over from before I stopped eating gluten. I had immediate stomach pains within half an hour, but it didn't turn into much. However, the next morning I woke up with almost flu-like symptoms: a TERRIBLE headache, achy body, and exhaustion and feeling constantly on the point of tears. My hands also ached, especially in the joints of my fingers, which was something I've never felt before. Later that morning I had some cereal that I mistakenly thought was gluten free from the cafeteria (Crispix) and got really jittery not long afterwards. Yesterday someone made me grilled cheese on some really nice wheat bread and my heart rate shot up to 140 (it always seems to be the really nice 100% whole wheat/grain bread that makes my heart rate shoot up). Tonight like a complete idiot I said "Why not?" and ate some pizza and cinnamon sticks--my cravings got intense again just from reintroducing those few things back and I just REALLY wanted pizza--and I got so, so sick. An hour later I was in a fetal position with cramps that hit every few minutes for a while. I've run to the bathroom twice since. The weirdest symptoms have been being absolutely desperately thirsty all evening and sweating even though I've just laid around all evening. And of course my heart rate has been wonky and irregular. All through the past few days I've had terrible brain fog and exhaustion that is more severe than before I even cut out the gluten.

 

So obviously no more pizza for me   Since I wasn't gluten free for long at all, two pieces of bread (either by themselves or as a sandwich) is all I've been eating and what I'm planning on eating. I'm sticking to the diet I've had over the past two weeks otherwise.The test should be delivered next week sometime so I'll see if anything happens with that.

[GF Lover]

Even if your home test comes back inconclusive or negative you already know that eliminating gluten will help you so that is good news.  Getting a diagnosis can be very frustrating.  If adhering to a gluten fee diet is a concern for you it would help to have formal Medical Diagnosis to drive home the importance of the strict diet and to see if there is any damage.

 

Good luck to you. 

 

Colleen

[Pegleg84]

I think the horrible reactions to eating gluten again would be proof enough, but if the test is in the mail, hopefully it comes out positive.

Either way, you can probably safely declare yourself "might as well be Celiac," especially if there's a family history. I never had a positive blood test, and didn't tough it out long enough to do a biopsy, but Celiac runs on both sides of my family, my mom and sister both have it, so I've pretty much declared to my doctor that I'm Celiac and that's that. I miss out on things like deducting extra food costs on my income tax, but doing a ton of paperwork for a few extra bucks back isn't worth doing a gluten challenge and being sick for months.

 

In any case, good luck with the test. Get yourself off the gluten as soon as it's done and hope you heal up quickly.

[NoGlutenCooties]

This is slightly off-topic but I just wanted to throw it out there as it didn't really occur to me until yesterday after I had my endoscopy/biopsy and the doctor confirmed my Celiac (she even showed me the pictures).  Anyhow, I think there is a benefit to having an "official" diagnosis that I hadn't considered before now.  Now I know if I end up in the hospital for some other unrelated thing, it is in my official medical file that I have Celiac Disease.  That way the doctors know not to give me medicine with gluten in it and to feed me gluten-free food.  Without an official diagnosis, I could either get glutened because I'm not with it enough to tell them not to poison me - or they could think I was just being paranoid or on some self-inflicted weird diet (what can I say... doctors kinda suck).  So for me, having the official diagnosis is a little additional piece of mind.

 

Just my .02