Self-Diagnosis

[newuser01]

For the past 2 years I have felt constantly bloated and uncomfortable.  The feeling is aggravated by eating--seemingly regardless of what I eat.  I have lost muscle mass and weight due to malabsorption.  I am tired all the time.  My body feels weak.  I have multiple BMs every morning, none of which are normal... too lightly colored and not well-formed.

 

During that time I tried many things--I had my gallbladder removed, I eliminated various things from my diet, I saw multiple doctors, had many tests done.  None of these tested for celiac and recently I saw my symptoms described online by other celiacs.  

 

I know I was not supposed to go gluten-free without first being tested.  However, I am recently without insurance and the costs of the test is simply not an option.  I chose to go gluten free and see how I felt instead.  After two weeks, I felt absolutely amazing.  The best I'd felt in years.  The bloating went away, I was not tired, I felt like superman.  I could work out and eat what I wanted.  It was great.

 

During this time, I remained faithful to the gluten free diet.  However, two weeks later, I inexplicably felt the onset of my symptoms returning.  I blew it off and stayed with the diet, hoping they'd go away again.  But they didn't, and now I feel basically the same as I did before.  

 

What do I make of this?  I want to think... "Okay, I've ruled out celiac disease."  But why did it make me feel so good for two weeks?  Is there any reason why a person with celiac disease would see a great improvement in their symptoms initially, only to have them return and then slowly improve as the intestines heal?  This is pretty frustrating...especially because I thought I had everything figured out.  Any advice?

[cyclinglady]

It is really hard to stick to the gluten-free diet without a formal diagnosis, but I understand the lack of insurance. Two weeks is not long enough. Many of us take months to years to heal. Everyone heals differently. Read the newbie thread under the coping section, learn about the risks of cross contamination and have patience.

I am formally diagnosed, but my husband is not. He went gluten-free 13 years ago at the advice of my allergist and his GP. He would be the first one to tell you that having a formal diagnosis is best, but at this point he is not going to bother.

Good luck!

[LauraTX]

Just stick with it for at least a good 6 months before you give it up.  With a celiac there are a lot of ups and downs as the gut heals.  I hope going gluten-free gives you relief in the long term.  Read through the forums here and make sure you are being super strict with it, because if gluten is the problem it is an all or nothing kind of situation... one teeny tiny speck of gluten will make your gluten-free diet futile.  Also, if the gluten-free diet does continue to improve symptoms, a good term to use would be to say you have a gluten intolerance.  

[greenbeanie]

I'd also urge you to stick with it for longer. I do not have an official diagnosis, but my daughter does. We both had huge, immediate improvements after starting a gluten free diet, followed by rough patches now and then (for no obvious reason - I'm pretty sure it wasn't from unintentional glutening). You might find that other intolerances become clearer after being gluten-free for a while. Since going gluten free, what foods have you been eating more of that you didn't eat as much before?

In my own case, it took several months before I realized that I have an awful reaction to sulfites - not just sulfites added as preservatives, but also sulfites that occur naturally in fermented foods. Looking back now, it's clear that I've had this problem all along, but my system was so messed up with diarrhea from gluten that I couldn't tell what was what. The sulfite problem actually worsened on a gluten free diet because I was suddenly eating a lot more (homemade) baked goods than I ever had before. Since I'd always felt yucky after eating wheat, I'd never baked much. Then I started baking gluten free stuff and loved it, so I ate a lot more stuff made with flour. It turns out that a lot of gluten free flours are high in sulfites because they're used to bleach the potato starch flour, tapioca flour, and some other starches that are in many gluten free flour mixes. You can't tell that by reading the labels (at least in the U.S.), so it was very puzzling why other symptoms worsened suddenly. I was also eating more salads, and salad dressings are also high in sulfites. Once I finally figured out what was going on and drastically reduced my sulfite intake too, everything improved again.

Anyhow, I'm not saying that sulfites are necessarily a problem for many people - my allergist seems to think it's a fairly uncommon problem. But the point is that your initial improvements and then worsening on a gluten free diet may indicate some other intolerance emerging or becoming clearer - it doesn't necessarily indicate that gluten wasn't a problem. Hang in there!

Edited to add: Oh, and I see that this was your first post. Welcome to the forum!

[GottaSki]

Welcome!

 

A two week gluten elimination is entirely too short a time to rule out celiac disease.

 

If you are certain you will not be pursuing celiac antibody testing, then make sure you remain COMPLETELY gluten-free for six months.  When gluten is removed our bodies react to smaller and smaller quantities of gluten so if gluten is still entering your body and you are having an autoimmune reaction to it -- you will not improve if you don't remove it all.

 

Give this thread a thorough read:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Good Luck to you

[newuser01]

Thanks for the responses.  I will stick with it.

[mamaw]

Also  there  could  be a  good  chance  of  cross  contamination issues  here.... And  I agree  with  other posters  two  isn't  time  to  heal your  body....another  thought  is you  can be  reacting  to  other foods  now  even though  they may not  contain  gluten....Try  digestive  enzymes  & probiotics  as well....

[nvsmom]

A food and symptom journal may help you keep track of improvements or notice any other foods that bother (like dairy - about half of all celiacs are lactose intolerant at diagnosis).  The changes are slow to come, and in the first three months there can be lots of backsliding, but after 6 months most people are noticeably better.

 

Best wishes!

[BlessedMommy]

Best wishes!

 

I don't have a diagnosis myself and I wish that I did, but in my situation, the doctors I consulted didn't help me, I did some working on my own to figure out my problem, consulted with a naturopath, and by the time that I realized that I definitely wanted the celiac antibody tests, it was too late....I wasn't able to tolerate a gluten challenge.

 

Unfortunately celiac testing isn't low cost and available to everyone, sometimes you have to go through hoops to get it! Luckily, though, you don't need a doctor's permission to eat gluten free, although a medical diagnosis can be helpful when dealing with others.

 

I hope that you feel better soon and figure out exactly what's causing your issues!

[newuser01]

I appreciate the responses on here.  I've been sticking with the gluten-free diet as best I can.  It has now been over two months now since going gluten free.  Today I am feeling bloated and extremely weak.  So far the only positive results I've had were (1) two weeks after going gluten free the symptoms practically disappeared and stayed away for about 10 days, and (2) about two weeks after that the symptoms briefly subsided for another 5-days to a week.  I've also tried to avoid dairy, but sometimes that's just impossible.  At this point I'm confused and frustrated.  I know I should have gotten a formal diagnosis, but like I said--no insurance.  I would give up on this but for the initial results.  I felt so good after those first two weeks and I cannot explain why the symptoms returned.  Occasionally, I'll eat out, somewhere where cross-contamination is possible, and the next day my brain fog will return and last for about 2 days.  Other than that, the symptoms are just constant--bloating, diarrhea, discomfort, and muscle weakness.  Since my purpose here is to self-diagnose, I want to know whether I should feel better by now.  I don't want to be "that guy" who walks around demanding gluten free food if I don't actually have celiac disease.  So, here's my question.  Does anyone know of a reliable source to refer to as to how long I'll need to remain gluten free before expecting results?  I know it varies depending on how long I went undiagnosed.  I've had these symptoms for the past 2-4 years.  I cannot find any reliable information on this.

[Jmg]

Are you keeping a food diary? You've had progress from going gluten free, which you'd be able to look back on and draw confidence from. You could now try maybe just a few days without dairy or corn/soy/etc, and note down how you're feeling 

 

It's difficult when your in the moment to assess how you feel, but a diary can help you track change over time. I did one a few years ago, before I realised gluten was an issue for me.  I made changes to my diet (reducing sugar) and recorded both what I'd eaten and how I felt. After 3 days I could see the difference reflected in my comments alongside the meal description. It established the link between diet and how I felt, sadly I drew the wrong conclusion as although refined sugar isn't good for me I didn't identify gluten.

 

It's also helpful as it makes you much more aware of just what you're eating, who knows maybe there's a contaminant sneaking in and now your body is free from the all out assault of constant gluten it's now much more sensitive to smaller amounts?

 

Good luck! 

[jiggles]

Hi ,

You could try going grain free and just stick to "whole foods "

meats veggies and fruits ect ,

This can help us to heal faster and feel better again ,

I had to avoid all dairy at first too,

Then at a later date you could try adding in some factory made gluten free foods and baked goods to see how well you tolerate them ,

Some people can tolerate factory made gluten free foods no problem at all,

whilst others may need to seek out what suits them best ,

I prefer to use factory made gluten free foods as treats ,

I do eat rice and bread though

but I am still healing and think I feel better if I stick to mainly whole foods ,

Hope you feel better soon x x

[1desperateladysaved]

I had 4 days of bliss after going gluten free.  After that I experienced what I now believe was cross contamination issues and felt awful.   I next discovered I was dealing with many more intolerances and as I cut those foods out and added enzymes, my mind cleared.  Not to say this is the recipe to everyone's success, but to say the layers of problems can be complicated and time consuming to figure out.  I think that feeling good for a couple of weeks in the beginning is a hopeful sign.

 

Dee 

[cyclinglady]

There is no "reliable advice" regarding the amount of time it takes to heal from Celiac Disease. That is because it is an autoimmune disorder that relies on diet alone for healing and everyone heals at a different pace. How can doctors or researchers track actual compliance from patients other than locking them up and feeding them gluten free foods for a year or more (I am not volunteering!)?

Again, I know you do not have insurance. You can play around with the diet for a while, but at some time you will have to decide whether or not you want to go gluten free for life and that includes avoiding cross contamination like the plague. And if you think you have a lactose intolerance (or any other intolerance), you have to avoid those foods 100%. There is hope for some food intolerances which you may get back in the future, but gluten is not one of them if you have Celiac disease.

It is all or nothing!