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I Swear I Have Celiac Disease...but....


ktnhsv

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Jestgar Rising Star
I would stay on the diet for at least a month and eat only whole unprocessed foods during this time. Make sure you are also staying away from dairy during this time.

I agree. Eating healthy can only be doing you good, whatever your issues are, so try to make this a permanent change, as much as you can.


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  • Replies 59
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ktnhsv Newbie

I definitely want to keep eating healthy!!!! It feels fantastic, loads more energy.

Why should I stay away from dairy?

Jestgar Rising Star

Many people have difficulty digesting lactose before their villi have healed. You may or may not, but it's easier to cut out the milk for a few months. Some people use lactaid tablets if stopping dairy is too much of a challenge (but still cut back as much as possible).

jadeblue Newbie

awesome job ktnhsv!

i'm going to start gluten free, today i threw out most of my gluten. i feel so lucky to have found this website today!

keep up the great work, i'm hoping i'm as successful as you at staying away from the gluten :)

  • 3 weeks later...
ktnhsv Newbie

Well I failed miserably. :( And I feel terrible again. :(

ravenwoodglass Mentor

Well I failed miserably. :( And I feel terrible again. :(

We all have a tough time in the beginning. Do you know where it slipped in? What can we do to help?

ktnhsv Newbie

We all have a tough time in the beginning. Do you know where it slipped in? What can we do to help?

The holidays. Plus it feels hopeless, like I'm torturing myself and it probably won't help my issues. :(


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ravenwoodglass Mentor

The holidays. Plus it feels hopeless, like I'm torturing myself and it probably won't help my issues. :(

The hopeless feeling could very well be related to the gluten slip up. Gluten can and does effect many of us mentally. We can also go through withdrawl which can cause us to be irritable, weepy etc. Don't lose hope, get back on the gluten free diet and give it a good chance to help. Healing doesn't happen overnight.

Ahorsesoul Enthusiast

ktnhsv,

You will be glutened now and then. Does not matter in the long run. Eliminate what glutened you and move on. This is a all or nothing world. We do the best we can. I have not met one person who went gluten free in an hour, day or week.

It takes a long time to figure out what is in your house that will gluten you. You will finally get to where you feel better. It's well worth the effort.

Now kick your self and figure out what glutened you. If you cheated, do not do that again because you know what will happen. If you couldn't resist the special Holiday treat, learn how to make it gluten free. There is nothing that can not be made gluten free.

Hard? Yes. Get over it, it's not impossible. You can do this.

You can be in control of your life.

BigDogz Explorer

Well I failed miserably. :( And I feel terrible again. :(

If everyone on this site was honest, I'd bet 99% of us "failed miserably" at least a few times in the beginning. I know I let my cravings get the better of me 5 or 6 times before I finally learned my lesson! And what a lesson it was, too!!

I can't even remember now what it was that I'd eaten, but I sure remember the results! The first symptom hit while I was driving to work - a sudden dull headache that was quickly followed by a complete loss of the left half of my vision. I, somehow, made it safely the last 2 or 3 miles to work but by the time I made it inside the headache had escalated to an excruciating level and my left eye watered uncontrollably. It's really hard to explain in a way that doesn't make me sound like a nutcase, but I had a strange feeling that a huge electrical charge was building in my body and would discharge in a massive, violent jolt at any minute.

My supervisor was concerned and drove me to the ER. If I wasn't already a little scared, I sure was when the admitting nurse rushed me right back and told the next nurse that she was making me a "priority 1 stroke protocol". I had no idea exactly what that meant but I can tell you the word 'stroke' terrified me!

The horrendous abdominal cramps and watery diarrhea hit a short time after arriving in the ER. In the next 2 hours, I had 11 episodes of diarrhea and felt exhausted and dizzy despite the IV fluids I was being given. I wasn't sure if I should be glad I had a sympathetic doctor or worried something really bad was going on when he walked into my room to check on me while awaiting test results and announced, "God! You look horrible!"

Some time later, and after multiple tests, the doc came back and reported that my CAT scan and bloodwork were fine and that he felt I was having a "gluten-induced migraine with amaurosis fugax - a specific type of visual aura". I was told to avoid gluten (like I really wanted it after all of that!), given prescription pain meds and instructed to follow up with my own doc ASAP. The headache, feeling of being off-balanced and the visual disturbance lessened but didn't go away completely for 3 DAYS!

Interestingly, I described the feelings of an impending electrical jolt that I had experienced that day to a friend of mine and he told me that he gets a similar feeling just before he has a grand mal seizure! I've read that some people do experience gluten-induced seizures and I'm absolutely certain that I was perilously close to having one that day. I know the whole, awful experience has convinced me that no temptation is EVER worth feeling like that again!

The last thing I want to tell you is this...the longer you are gluten-free, the less difficult it seems. The cravings DO go away, especially if you attack them in little baby steps. I was a carbohydrate and Mt. Dew junkie. I knew that the caffeine and sugar were just as bad for me as the gluten, but I cut the gluten first. Once I had a handle on that, the Mt. Dew was traded for a non-caffeinated grape soda. Once I no longer missed the caffeine, I slowly eliminated the grape sodas. The key is not to try doing it all at once and don't make the changes so severe that you feel deprived. Yes, I eliminated the sugary sodas but that doesn't mean that I can't still have an occasional bowl of ice cream, serving of pudding, Reese's peanut butter cup or make a batch of gluten-free brownies. If you try to do everything at once you're going to feel overwhelmed and you're more likely to give in to temptation. The most shocking thing you will find is that, once you commit to gluten-free and start healing, food tastes SO much better!!!!

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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