Am I Really Celiac?

[Nick-incollege]

A year and a half ago I started feeling tired/dazed/sore throat all the time. Whenever I drank beer, I would get wicked hangovers. Then it started getting worse, I felt tired and nauseaus all the time. One year ago, my blood test was negative for celiacs, but a biopsy was positive. (i had the whole scalloping folds thing) I immediately went gluten free, and studied abroad in another country for five months, during which I felt wonderful - I got about four hours of sleep a night, and would still wake up the next day feeling refreshed, completely alive, healthy, and energetic. I did cheat from time to time though, eating a cookie or a slice of pizza once a week or so. I paid no attention to the alcohol I drank as long as it wasn't beer, so I'm guessing I drank a lot of wheat vodka, and had heikenkens pretty often. My rules were just don't eat anything that explicitly had wheat- but besides that i would eat fries or fried food at restaurants or whatever. I still felt great.

 

I returned to the states six months ago, and all of a sudden I felt terrible. Tired, terribly dazed, nauseaus and a sore throat. After two months I realized I wasn't strict enough - rice at my dining halls probably had gluten all the time, fries weren't okay, wheat vodka wasn't okay. So I cut all that out, and for the past four months, I have not eaten or dranken a single thing. I cook my own food, none of it's contaminated, all gluten free. I rarely eat out, and when I do, it's gluten free so no fries or anything. But I still have all my symptoms, and have felt terrible for four months.

 

Any help from you guys? I don't get why it makes sense for me to feel great for five months, even doing so pretty big cheating, then all of a sudden feel bad again even though I'm perfectly gluten free. Do you think I don't actually have celiacs, or there is something else going on? I did get diagnosed through a biopsy. I mean it's been four months of being perfect, and I still feel crappy. I also have never had the whole stool/intenstine symptoms, which most people have. The sore throat isn't too typical either.

 

I've started taking iron pills, maybe that will help. I'm 21 and a runner/skiier though, and should not be feeling crappy every single day. maybe somehow i got severely sensitive very quickly and thus react to even a miniscule amount of gluten in food, and am hopeless? like I said, I don't think i could improve my diet any more, that I'm aware of. I research every alcohol I drink (no wheat vodka, no spiced rum) and as far as I know all my food is gluten free. I stay away from flour if it might be in the air.

 

Thanks!

[Scott Adams]

Around the time I was diagnosed many things like tomatoes, milk and especially hard alcohol--irritated my gut and seemed like a celiac disease trigger. If your villi are damaged this could be your issue. I later discovered that most of the things I thought were a trigger, including hard (distilled) alcohol really weren't the issue (distillation does remove gluten). For me the healing process took about 2-3 years, and after that I could once again eat milk, tomatoes and hard alcohol--everything except gluten.

[cyclinglady]

Scott has given excellent advice.  When I read your post, I thought about mono.  Have you been tested for that?  My teenage niece is on  her second round of it.

[Nick-incollege]

Does mono cause stomach issues? 

 

It also only last a few weeks, or in exceptional cases like three months right? I got a mono (blood) test a few months ago, and it was negative.

 

Perhaps consuming things like hard alcohol is the issue, although sometimes I feel fine for a week, then feel bad for two, and back again. If I drink during the beginning of that clean week I feel fine. Plus, it wouldn't make me tired if it's gluten free would it, even if it theoretically bothered my stomach?

[nvsmom]

I was an undiagnosed celiac for decades. During that time my symptoms would come and go, change form and last for varying lengths of time. As I got older my symptoms would grow in severity; they lasted longer, became more frequent and caused more pain. Eventually it led to other diseases too. Basically I went from being a varsity athlete, running 20 miles on the weekends and bench pressing my body weight to not being able to lift my arm over my head, migraines about half the time, and still feeling tired after sleeping 10 hours at my worst.

 

Symptoms don't grow worse in a linear fashion. You get better then a bit worse then really good, and then really bad... And those symptoms can go from great to really bad within days!

 

You were not gluten-free so your body has been fighting this since your biopsy. Eating gluten once a week was more than enough to keep your immune system overactive. Take me for example, it took well over a year for my autoantibody levels to fall to normal and that was with being extremely careful and gluten-free - not just gluten lite.  I still have some issues. You really need to be 100% gluten-free and you may need more time to recover  Miniscule amounts are enough to affect any celiac BUT it is possible that your symptoms are changing so you've started to feel it more now even though you are recovering.

 

Are you sure you are gluten-free? You checked your spices, soy sauce, worchestershire sauce, vitamins and medicines? Are your shampoo and lotions gluten-free? I tend to get some of mine in my mouth so I know it's something I need to be careful of.

 

Mono can kick off symptoms of celiac disease. It has been linked to a few autoimmune diseases.  

 

I hope you feel well soon.

[Nick-incollege]

I've been 100% gluten free for the last four months (really for the last year, although before those four months I did have slightly contaminated food once in a while - like ate rice at a dining hall without checking if its gluten free, cheated once a week but that was like 8 months ago)- and yep, checked my shampoo, medicine if I take it, alcohol, and make my own food.

 

I get reactions for a little less than two weeks, with a little less than a week between each episode. Usually it's not 100% when they clear and end, but it's something like that. I really don't know what could be causing them (I drank captain morgan a few times, when everyone on these forums says is gluten free but one of my celiac friends says is not! And once had doxycline, which my friend also said bothered him. So maybe that explains a few of those times?). But for the most part, I have absolutely no idea what causes them. I'm 21 and pretty healthy, and I know i'm being great about being gluten free - so maybe it's something else?

 

I dunno, usually when I sleep I feel terrible - like really sick. I tend to get a little bit better as the day goes on, and as I'm eating and right after I eat I feel great. I also feel good when I drink, unless I'm having a terrible reaction. I don't have any intenstinal issues (that I know of) which is weird, considering most people with celiacs have like bathroom problems. I just get nauseous, sore throat, and extremely tired/hazy. (My stomach feels ravaged, if that makes sense)

 

Thanks for your response though! It means a lot to me. Just hoping I can find out why this is all happening, my current theory is it isn't actually celiacs even though I had a biopsy that said it was. maybe it's a similar food intolerance?

[BelleVie]

It could be a lot of things, but I think that if you are drinking pretty consistently, that could be causing a lot of stress to your body. Your body is already trying to heal from the damage caused by celiac, so I imagine if you are drinking fairly often, you are placing stress on your liver and immune system. I know that for me, I could drink just fine in college, but, like you, I began getting incredibly bad hangovers from beer--even from drinking just one or two! Eventually it got to the point that my body just couldn't handle alcohol anymore. These days, I drink a glass of wine every couple of weeks and that's it, and I definitely feel better for it. 

 

Have you considered other food sensitivities? You could try keeping a food diary and taking note of when you feel sick and what your symptoms are. Maybe with a few weeks of that, you will be able to better pinpoint where the problem is lurking. 

[BelleVie]

Oh, I should note that the beer was an issue due to celiac, obviously, but I have had the same problem with all forms of alcohol, gluten free or not. 

[NoGlutenCooties]

 Plus, it wouldn't make me tired if it's gluten free would it, even if it theoretically bothered my stomach?

 

Alcohol can definitely make you tired - for one thing, it can mess with your blood sugar level and give you low blood sugar, which can make you feel extremely tired.

[Scott Adams]

If you have leaky gut caused by gluten it is very important not to slip up and eat even tiny amounts--the only way to heal your gut is to cut out gluten 100%. If you can do that for a prolonged period you may be able to get over some of the associated issues. It is also important for you to determine if you have additional food intolerance issues, which usually requires an elimination diet and food diary. I ended up cutting out chicken eggs, and had to switch to duck eggs.

[cyclinglady]

Again, excellent advice!  Okay, you don't have mono and that's good.  I think it might be continued cross contamination.  I ate yesterday at the local university.  I went to the student dining room the day before and inquired about gluten free options.  The chef assured me that I'd be okay and that they accommodate gluten free students all the time.  So, yesterday I went for lunch since I was on campus.   I asked for the chef and he came out and took me to a food preparer who has a gluten intolerance.  She told me that she wasn't officially diagnosed, but that she eats gluten free.  She went through foods that I could not eat (e.g. all the hamburger meat -- even patties have gluten).  So, there were many "no gluten" containing ingredient  foods.  Then I watched as a server scooped up beans, smooth them on to a flour tortilla and then placed the spoon back into the bean pot.  Ugh!  Cross contamination!

 

So, I opted for a salad make in the same area.  I had hoped that it was gluten-free since it was prepared by the same girl with gluten issues.  But the bean/tortilla server was scooping up the salad without changing her gloves.  I tried to avoid the plate edges, but I got glutened anyway from either that or a cutting board that more than likely had gluten.  

 

I went to get a fresh gluten-free brownie and to my dismay, it was kept in the same case as regular cupcakes -- not covered or packaged separately.  I asked and the "baker" told me they use a gluten free mix, but they don't use a dedicated mixing bowl, scraper or pans!  Ugh!  Gluten Contamination! 

 

I ate a banana for dessert.

 

I guess what I'm saying is that you need to check for cross contamination in your school dining room.  

 

As far as drinking goes.  Order yours in a plastic cup.  Those bar glasses are swished in a soapy sink and then "rinsed" in another sink (no running water).  I can only imagine all the gluten left over from beer glasses.  But, I do think you should abstain from drinking until you are feeling better.  It's only for a few months.  

 

I have emailed the school and offered to review cross contamination procedures.  Let's see if they respond!