New Member--symptoms Worse After Being Gluten Free For A While?

[JenKuz]

Hi All,

My name is Jen. I am currently being tested for celiac sprue. I'm expecting blood results this week, and am having a biopsy at the end of October. Just gruesome enough for Halloween

Here's a rundown of my experience:

I was hypothyroid as a baby. It was resolved with medication, I don't know the details on how. For the last several years I've gone to the doctors to be tested for hypothyroid several times, because I felt very fatigued and my hair was thinning. I hadn't gained much weight, but was bloaty and puffy all the time. I suffered frequent dizzy spells, where I would have head rush that hung on for five to ten mintues before clearning. I actually passed out a handful of times; once, terrifyingly, in the shower when I was home alone. Lucky I didn't conk my head. The GI symptoms were only intermittent then; nothing that seemed way out of the ordinary, though I was often gassy and uncomfortable.

When I travelled in Africa last summer, however, I suffered a couple of bouts of some kind of enteric disease. After that, the symptoms began and did not remit for several months. I was diagnosed in Africa with giardia; this was based on a clinical assessment, however, and was never confirmed through stool tests. Since then, all giardia tests have been negative. Everything else infectious has also since been ruled out.

When I returned from Africa, I realized that I couldn't get through most meals without suffering waves of nausea. These would come on so suddenly that I would find myself with a bite of food still in my mouth, wondering if I could choke it down and hoping I wouldn't vomit at the table. I had chronic soft stool, and began noticing that I wasn't digesting all my food. Pieces of vegetable (not just corn) were visible in the toilet. This concerned me quite a bit. After a couple of months it hadn't gone away, so I went to the doctor.

I got a referral from this doc to a gastroenterologist, but unfortunately I have really crappy student insurance and had to wait several months to see anyone. In the meantime, last february, I had read that people with giardiasis can have damage to the gut much like celiac disease causes. I read that patients often do well on a no-starch diet while the gut heals. So I started following the Specific Carbohydrate Diet, and within a day or two I felt like a whole new person.

Before this diet, I would have bouts of insomnia and nightmares, and wound up sleeping 10 or more hours a night because my sleep was such poor quality. Some doctors I saw (for hypothyroid) thought this was "just depression" and my symptoms were psychosomatic. I tried to explain that this was all sudden and new, that I had never felt anything like depression, on the contrary I'd always been a cheerful, energetic, and driven person, which was why I felt so uncomfortable with the changes I'd seen in myself.

As soon as I cut starch out of my diet, I was sleeping so soundly, I could wake up refreshed after 7:00 hours, full of energy. I felt happier and more content than I have since I was a child, I think. My moods were level. My grouchiness totally disappeared, even in Atlanta traffic. Moreover, my stools were solid, no longer clay colored. I even stopped carrying wet wipes with me everywhere I went. I started studying at coffee shops again because I was no longer afraid I might need to vomit or have D in the middle of the day.

In short, I felt fantastic. I've never felt better, ever. Friends commented on how healthy I'd been looking lately. They started commenting on how cheerful I'd been, how things must really be looking up for me, the field must have been so good for me.....

In any case, I assumed that I was right about giardia, and if i kept it up for a few months, my gut would heal and I'd be able to go back to regular diet. Four months later, I did a training program that involved eating dorm food, so, not being able to stay on my diet any longer, I added back all starches. The symptoms came back within a couple of days, and within two weeks were just as bad as they'd ever been.

Then.....they got worse. I mean far worse, even than they'd been when I got back from Africa. My sleep patterns went screwy, I started craving food like a maniac. I would never have thought a person could be famished and nauseated at the same time! I puffed up again; my eyelids swelled, the bags under my eyes came back. The D came back, and worse than ever. And I won't even describe the stools. Just...wrong in every way. I'm fatigued, constantly on the verge of tears, chronically angry for no good reason at all. My skin has become blotchy and the eczema has returned. Now this...my knees have started to swell and ache, and the pain goes down my shins to my ankles. Before going on the diet, even after the GI symptoms had started, I was walking my dog four miles a day. Now I can barely get around the block.

I'm only twenty-eight, and I feel aged. I'm expecting blood test results tomorrow; to be honest, I'm hoping they confirm my suspicion that I have celiac disease. At least it would explain all this, and give me control over it and hope that by a change in diet I will feel better again someday soon.

But what if they don't? Am I a hypochondriac? Spend too much time on internet chat-rooms? Crazy? Depressed? Do I have "IBS" instead, which all the doctors seem to want me to have (I can't imagine why; it seems like a far less rational dx, since they don't have a clue what causes it)? Or should I trust my gut, so to speak, and approach life as a celiac?

Has anyone here ever known someone who thought they had celiac, and then turned out to have something else?

[Rikki Tikki]

Hi Jen:

I would just say that regardless of how your blood tests turn out if you feel better not eating gluten, don't eat it. Many people on here have gone gluten free because they just feel better and I don't see a problem with that.

Welcome it's good to have you!

[ravenwoodglass]

I am sorry you are going through this but welcome to the board. I don't think your crazy at all, and it sounds like your body has given you the answer as to whether or not you can tolerate gluten. For many of us once we become symptomatic and cut out gluten when we start to injest it again the body reacts with much more violence than before. For the testing that convential doctors do to be as accurate as it can, and thats not saying much there's a lot of false negatives, you need to be consuming gluten on a consistent basis for at least a couple of months.

Have you tried going gluten free again to see if it helps? Personally I would go gluten-free once again and then maybe challenge with some wheat again after your feeling better and see if the same thing happens again.

You could also check out Enterolab and their stool testing and gene panels, those will give you answers without your needing to gluten yourself any longer.

[Matilda]

..

[Rusla]

Well Jen, you aren't crazy welcome to the board. Now you do know that with these gluten tests you need to be eating gluten everyday up to the test. Even then you could come back with a false negative.

Sometimes an illness, stress or traumatic event can trigger this disease. Also remember when going gluten-free that this has to also be any skin creams, makeup and hair products.

[lonewolf]

Sorry you're feeling so yucky.

I thought for sure my Celiac gene test would turn out that I had at least one of the main Celiac genes. I had ALL the symptoms and looking back on my life could see evidence from childhood. So, imagine my surprise when the tests showed I didn't have either Celiac gene. My doctor told me that this ruled out Celiac completely. But I know I can't eat gluten, no matter what any test says. I can't eat dairy, soy or eggs either, even though the last round of testing I had done said that I should have no problems with them.

So, I guess I have "Non-Celiac Gluten Sensitivity", which may or may not be the "something else" you were referring to. I can't eat gluten, whether a doctor tells me I can or not, whether I have a Celiac diagnosis or not.

An interesting side note is that I had my son tested by Enterolab. He did not test positive for gluten sensitivity, but the tests did show that he has a double copy of DQ1, so I know that I have at least one copy of the gluten sensitivity gene, just not the Celiac gene.

No matter what the tests tell you, listen to your own body. If you feel better gluten-free, then stay that way.

[Nancym]

You have a lot of the same symptoms I have. The eyelid swelling one was really strange. I'd wake up with one eyelid about 4x the size of the other one. It'd happen about once every 6 weeks or so.

I am Gluten/casein and soy free and I am still experiencing the soft stools. But many of my symptoms are gone. If I stick to a strict paleo diet I do a lot better. But I have a hard time being that strict. I think legumes and seeds, maybe nuts get me icky too. Not as icky as gluten, but they keep the bowels in a bad state. I gotta stop bringing home the peanut products. *sigh*

[mouse]

I don't think I can add much to what everyone else has posted. But you can have a false negative on the blood test. You can never have a false positive. Also the biopsy can be hit and miss, depending on how bad the damage is in the small intestine. Your doctor needs to take 8 tp 10 biopsies from different areas. There are some doctor's out there that consider the diet a good dignostic tool and recognise it as such. They will then say that you are gluten intolerant. If you decide to do the biopsy, then you cannot stop eating gluten on a daily basis. I don't know how long you have been back on gluten, but if it has not been long enough, then it can lead to negatives on both the blood test and the biopsy. I hope you get your answer soon, so that you can start to feel better.

[aikiducky]

I know the feeling of "is this all in my head?" But seriously, stop and think for a moment. Your symptoms are quite severe, and the improvement on a grain freee diet was dramatic. That not only in your head! Trust what your body is telling you, even if the tests happen to come back negative. And.. let us know how you're doing! This board is a great resource for starting the diet after testing is over and done with.

Pauliina

[JenKuz]

Thanks so much for your support and advice, guys!

I'm going to have to think about the gluten thing before the biopsy. If the antibody tests come back negative, then I'll keep eating wheat before the biopsy. But if they come back positive, I don't know what I'll do. I don't want to go through a biopsy in vain. On the other hand, I'm in grad school, and I have to take a qualifying exam between now and then I think I'll see what the doctor says on that. I don't think I can do well on this exam feeling the way I'm feeling....

In the meantime, I haven't had any genetic testing done. However, certain autoimmune diseases are in my mom's family. I don't know if these are associated with celiac or not....my mom and grandma both have RA, my grandma has MS. I had hyperthyroidism when I was little (I think I accidentally wrote *hypo*thyroid above, but it was *hyper*thyroid). They never determined whether it was transitory autoimmune (is that possible?) or viral. So, to the extent that those things are associated with celiac genetics, I may well have those genes....

I think I have a really good doctor. He took me seriously when I told him how much better I'd done on the starch-free diet. He didn't dismiss me when I told him that when I cheated with things like ice cream, I felt fine, but when I cheated with, say, croutons, I'd have a bad night afterward. And he immediately suggested celiac, before I'd told him about my dietary experiment, where all the other doctors I've seen have assumed it must be infectious because I've travelled. Granted, none of them were GI, they were all Nurse Practioners at student health.

I've been back on wheat for about two months going into the blood tests, eating it every day. I hope that's enough to have ample antibody if such exists.

Now, I'm studying epidemiology at school (in addition to medical anthropology...and aren't all my doctor's visits interesting sources of data on american medicine?) and as much research as I've done, I haven't found any definitive information on the specificity and sensitivity of the antibody tests. Does anyone know?

One more question, what do the enterolab tests include? Does one have to request them from a doctor? I was thinking, if these antibody tests come back positive, I should do some more exploratory stuff to test the extent of malnutrition for example. So whatever info you can give me on those would be great....

Thanks so much, guys! I'm so glad to have found this place!

[JenKuz]

So, my transglutaminase and gliadin antibody tests both came back normal. I know this does not mean I don't have celiac disease. It just means I have to wait much longer to figure out whether this or something else is wrong with me. *sigh.* Since I know how much better I felt on a wheat-free diet, I want to go back on it. Now I really have to wait until after my biopsy. And it so much easier for people to understand (and be understanding) if you have a definitive diagnosis....maybe I should just be like, "I'm going on the South Beach Diet." he he. Well. Back to the drawing board.

[aikiducky]

JenKuz,

you might think that people are more understanding if you have a definitive diagnosis but the truth is, most people don't really care. What they will respond to is how certain youfeel about your diet.

I ignorantly went gluten free before my blood tests, had a negative test result and so never progressed to a biopsy (because my doc was happy that "I didn't have it", and I had been gluten-free for several months by the time I got my blood test results back, and knew I felt better, so I didn't insist).

Anyway, I guess luckily for me I'm kinda strong willed and stubborn in some things. Whenever it comes up I just tell people, "I can't have gluten or casein, it will make me really sick for several days". I guess I say it with conviction because to this day (two years into the diet) no-one has everquestioned that. I mean, people do say things like "wow, really?" but it's not because they doubt me, it's because they never heard of it or they wonder about how hard the diet is.

If they ask if I could have just a little bit I say "no".

If they ask what happens if I do, I tell them, in detail.

Something people usually respond really well to is "Better safe than sorry, you know..." with a bit of a rueful smile.

My hubby took some time to really appreciate how careful he has to be with cross contaminating the kitchen but that was a matter of repeating often enough, giving him the time to also go through a period of adjusting to this new way of living, and seeing me be really sick a couple times...

I think what happens to people who feel they don't get taken seriously without an official diagnosis from a doctor is that they themselves feel insecure about the validity of their symptoms and the need for the diet. And other people respond to that.

hope this helps...

Pauliina

[JenKuz]

Hi Paulina,

Thanks so much for that. I really appreciate it.

I think my gluten-free diet could easily have influenced the blood tests, now that I think about it. I've been back on gluten for only two months, and I didn't realize how much someone needs to eat to have the antibodies (did I read 4 to 6 slices of bread!?). I haven't been eating it everyday; probably 4 to 6 slices of bread a *week*. So I guess I'll hang tight until the biopsy, and if it comes back negative, I'll go with enterolab.

For me, I think I really do need a biopsy, because if this isn't celiac disease, then it's something else that needs to be diagnosed, and the blood and stool tests have been useless.

And, even if the tests all come back negative, I'm going back on the diet. I just felt so much better when I was eating that way, why would I not?

[aikiducky]

For me, I think I really do need a biopsy, because if this isn't celiac disease, then it's something else that needs to be diagnosed, and the blood and stool tests have been useless.

And, even if the tests all come back negative, I'm going back on the diet. I just felt so much better when I was eating that way, why would I not?

I think that sounds like a pretty sensible plan. Indeed, if you feel better on the diet, why not? And if the biopsy doesn't discover complete villous atrophy, well, it doesn't give you a diagnosis but at the same time it also tells you that you haven't done too much damage yet, so in a way its also good news. And if it discovers something else, it's good to know.

Pauliina

[gary]

Hey jenkuz,

I was just interesting in asking you about your student insurance. I'm a student also right now, I just recently got married and so I had to get off my dad's insurance. I've been having problems for a couple of years now and we tested as much as we could think of before I got married with no luck. Now, I don't have any insurance and in no way would be able to afford paying the medical bills myself. I thought about student insurance but the brochure I picked up from the school said that they wouldn't cover any preexisting or chronic conditions and a few other things along those lines so I figured it wouldn't do me any good. It sounds like your conditions were preexisting, did they try to pull that on you or how did you get past that? Any informaiton you can give me would be very appreciated.

Thanks,

Gary