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Sunny600

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Sunny600 Rookie
Sunny600
Posted

I realize that I have been going about this all wrong, but I stumbled upon a gluten-free site somewhere on the Internet a month and a half a go when I was looking around for possible explanations for why I started every day feeling fine, and then got very uncomfortably bloated by mid afternoon, until I could barely walk by evening, and was getting a headache every night. I ate oatmeal for breakfast, but then ate bread products the rest of the day. It seemed very unlikely to me, but I was really tired of the discomfort, so decided to see what would happen if I eliminated gluten, and sure enough, those things almost completely disappeared within a couple days. Some other pains and perpetually cracked skin also disappeared, so it really seemed like I was having some kind of bad gluten reactions.

But then last weekend I finally did a "challenge"--ate a bagel and had Chinese dumplings made with wheat flour, and didn't really have all that much of a reaction. I felt briefly nauseous, had a brief bout of violent diarrhea, one day of nothing at all, and then three days of zero energy (even took a day off work for one of them), and very mild bloating and discomfort for about five days, and a return of the skin cracks. Could those diverse and not very severe things be related to eating gluten several days previously? They,ve gone away again now (six days after the gluten day), but it makes me feel like this is all in my head.

What I realize, having done this, is that I probably should have done some kind of testing before I tried the gluten-free experiment, but I honestly didn't know what to expect. And now I don't know what to think.

I don,t have what seem to be most people,s usual symptoms (diarrhea, namely), but bloating, discomfort, headaches, congestion, skin problems, and now that I read more people's stories, a dubious history (embarrassing periods of diarrhea as a child, cracked and bleeding skin on my feet my entire childhood that none of the doctor-prescribed creams ever did a thing about, iinconclusive abdominal pains as an adolescent that doctors never did find a cause for, a diagnosis of "spastic colon" as a graduate student, discomfort off and on--telling myself that everyone experiences "aches and pains"--though this past month has shown me that that perhaps isn't true.)

So, the question in--what now? My symptoms, of whatever it is, are mild, not debilitating like so many people's appear to me. My two grown children pretty much had diarrhea their entire childhoods, so maybe THEY should be tested. One of them suffers from depression, and sleeping inordinate amounts of time (he's on an antidepressant and ADD medication, and STILL spends long periods of time in the bathroom).

I'm not feeling terribly inclined to go back on gluten, even though the results of that one gluten day weren't so bad. I'm not craving it, or even really missing it, and one of the god things is that I have stopped feeling hungry all the time.

Any suggestions?

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Emport Newbie
Emport
Posted

Hi Sunny,

These symptoms can definitely be related to gluten!

For a partial list of symptoms, you could visit the National Foundation for Celiac Disease's website, they keep a Open Original Shared Link.

Different people react in different amounts of time. Some know within minutes of eating gluten, some hours, some never at all (but are still being chronically affected in ways ranging from infertility to fatigue to increased risk of certain cancers). And in fact one of the most common things that happens when people go gluten-free is that they find symptoms clearing up, that they didn't even realize were symptoms at all.

A couple of things to note:

a) be careful with oats! They are rarely safe unless they are certified gluten-free because they can get very contaminated in processing (and recent studies show that some strains of oat actually have gluten in them)

B) your body will take some time to heal completely, more than a few days!

c) if you can, it might be wise to visit a doctor you trust or a local celiac support center, and have them run tests for celiac disease. You'll need to be eating gluten consistently in your diet for the tests to be accurate

Sunny600 Rookie
Sunny600
Posted
  • Author

Thanks!

I haven't eaten oatmeal since I started eating gluten-free, but I really wish I had pursued testing before I started all this. It was really a kind of "hmmmmm, I wonder if this is what is going on," and sure enough, cutting the gluten really helped a lot, and now I really really don't want to go back to eating gluten to do the testing. The one day I did my own gluten trial, I wa completely knocked out for about five days afterwards. Maybe it was just coincidence, though.

I haven't talked to my doctor yet, though.....

Ninja Contributor
Ninja
Posted

Don't doubt yourself! Your symptoms are very real and many of us suffer from the those same ones. Follow your gut (pardon the pun).

Having affirmation from a doctor is nice, but many doctors don't have any idea about the vast array of issues Celiac can cause. They're out of their league. :rolleyes: On top of that, the blood tests have a 20-30% false negative rate and the biopsies are heavily reliant on who does the procedure (and who interprets the slides). I don't mean to deter you from pursuing testing, it's just that I understand not wanting to go back on gluten just to be tested...

I don't think it's coincidence that you felt badly back on gluten. You might be surprised how many more symptoms you find after being gluten free for a longer period of time. Things you would not even dream of can resolve on a gluten-free diet. :) Just a word of warning: we sometimes get more sensitive to trace amounts of gluten the longer we are off of it, so if you start feeling bad again.. you could be getting trace amounts. Oh, and we're also prone to other food intolerances. :unsure:

You're pursuing health for yourself.. and unfortunately, in the society we live in, we sometimes cannot count on doctors to help us with that.

Good luck

Sunny600 Rookie
Sunny600
Posted
  • Author

Thanks! I really appreciate your comments. I think I am NOT going to pursue testing, because I just don't feel up to it (it looks like there really aren't any doctors in my area who know anything about this). But I WILL continue to eat gluten-free, and let that be good. I really do want to feel better, and this last month and a half of gluten-free eating has left me feeling way better than I had in a long time. I may pursue having my sons, tested though.....

Thanks again.

Ninja Contributor
Ninja
Posted

I'm glad for you! Just keep in mind that your reaction to gluten could indicate Celiac which is a a serious autoimmune disease.

It's muuuucccchhh easier to pursue testing when you haven't gone gluten-free yet! I hope your sons get some answers.

Welcome to the forum, by the way. :)

lesliev523 Rookie
lesliev523
Posted

Thanks! I really appreciate your comments. I think I am NOT going to pursue testing, because I just don't feel up to it (it looks like there really aren't any doctors in my area who know anything about this). But I WILL continue to eat gluten-free, and let that be good. I really do want to feel better, and this last month and a half of gluten-free eating has left me feeling way better than I had in a long time. I may pursue having my sons, tested though.....

Thanks again.

I just had an incomplete blood test by my inefficient doctor that was negative. I have decided to not pursue further testing either. It is too much of a strain on my insurance and on my wallet! I am much healthier gluten free. Noticeably better. I did want a diagnoses, because I have family members that think of it as a fad diet rather than something serious... but I decided that my medical records are sealed, and I could tell them what I want. Otherwise there would be no respect for how I need to eat when I visit them. I went gluten free before and felt wonderful for about three months, until I visited my mom and she had me convinced it was all in my head. Lo and behold... my symptoms came back, but even worse than before.

So if you are good without an official diagnoses, then more power to you! Good luck!

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    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

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    • trents
      Outgrow celiac?

      By trents · Posted

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    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

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    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
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