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Hollylou42

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Hollylou42 Rookie
Hollylou42
Posted

I am new here and I mostly just wanna put out there what I have been feeling and get some feed back

I am in my early 20's and been experiencing digestive issues for about a year. I have been lactose intolerent for years now, and at first I thought it was just that getting worse. But then with the diarrhea, and constipation off and on, the bloating, being gasey, always tired, nausea, sometimes waking up at night with stomach cramps, I began to realize this was something more. Back in April, I realized I was loosing weight (only about 5 lbs but I am pretty little to begin with so it was enough), and I tried a probiotic homeopathic IBS medicine, that made me feel worse.

I finally talked to me my mom about all of my symptoms last month, by then I had lost 13lbs and my symptoms were everyday, sometimes diarrhea for a week straight where I wouldn't be able to eat anything. My mom informed me that when she was my age she was diagnosed with Celiac disease (even though now she eats gluten freely with no symptoms). I guess she was really sick, down to 85 lbs when she was diagnosed. I was surprized to hear this from her, and she suggested that since Celiac is hereditary, that I try being gluten free for a couple weeks to see if there is an improvement. (Her improvment on a gluten-free diet was immediate)

Well it has been two full weeks on a gluten-free diet, and the first 4 days I felt great, and since then I have had diarrhea and constipation and the full sort, and still loosing wieght. Given there are some good days where I feel okay, (when before there was no such thing as a good day), but I am still not feeling well everyday. I am worried that it may be something other then Celiac (which worries me since a lot of the other stomach problems it could be don't have a cure or a way to feel better).

Am I missing something? I haven't been sick with digestive problems that long, so I wouldn't think my villi would be that damaged to not respond to gluten-free immediately. Why am I not feeling better?

For the past week or so, I have been keeping track of everything I eat, the time I eat it and then the time I feel bad or have a symptom. I made a doctors appointment for this weekend, and I plan on bringing my list of food and symptoms. Mostly I am just scared that it will be months before I find out whats wrong with me, Celiac or not, and I will have to continue to live with feeling horrible most days.

Any suggestions or comments?

-L-

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kbtoyssni Contributor
kbtoyssni
Posted

The fact that you responded well to a gluten-free diet for a few days is promising. Your villi will be very damaged so it's likely that you'll still feel pretty rotten for a while until they heal. You could also try cutting out dairy temporarily. Lactose is digested by the tips of your villi so if they're damaged you may have trouble digesting that for a bit.

Keeping a food journal is an excellent idea. My one worry is that it's hard to test for celiac once you go gluten-free. The blood tests show antibodies to gluten which disappear once you stop eating it and a biopsy isn't always accurate because damage can be patchy. Plus you will start to heal as you go gluten-free. These are the traditional ways of testing for celiac so it's very possible your doc will want you to go back on gluten to do the testing. Whether you want to do that or not is a very personal decision. Many people start eating gluten and feel so awful that they have to stop. Dietary response is enough for them to maintain a gluten-free diet. Others need "doctor's proof" that they have it to make themselves stay gluten-free. One method or testing you could try is enterolab (enterolab.com). You mail in a stool sample and they can test for gluten intolerance even if you're gluten-free. It's not super accepted in mainstream medicine, though, so it's probably something you'd have to do on your own. This is not necessarily a bad thing. I have read some stories about people with "official" diagnoses having trouble with health insurance later in life so I'm a bit nervous about having that diagnosis on my record.

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