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Sick Of Being Sick

Ebonyjade93

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Ebonyjade93 Rookie
Ebonyjade93
Posted

I'm 19 years old in June and since I was 16 I have had the same problems, my parents are both amazing with all this.

When I was 16 I started getting really bad acid reflux, I used to just put up with it, but then I started getting bloated, sore stomach and constipation. Since this started happening I'd get real bad anxiety when I felt sick.

So me and my mum went to the doctor, he suggested food intolerance, so then it was up to us to find this food that was causing so much pain and stress. I searched the net and I went on an elimination diet, my diet contained, fish vegetables and rice for about a week before adding things in, that was a tough week, I added gluten in first and I got bloated strait away, so then we cut it strait out.

I felt better not so tired and moody all the time, I was on it for about a year, until I failed and ate a piece of bread, and it did nothing, over a few months though I started feeling bloated all the time and I always felt so overweight, I'd have a flat stomach in the morning and as soon as I ate anything bammm bloated and gross, ready for the day :( it got worse and worse so I tried the diet again, I did not try hard enough and gave up after a month, not because of cravings, because I still didn't feel good.

Well, after that I went downhill, I'd have bad acid reflux, constant bloating, fatigue, sharp stomach pain, nausea and not being able to sleep properly, waking up at night and feeling so sick, so I'd lay infront of the tv to distract the stomach pains, I'd get chills, and ibs symptom. I've been to my dr since and, I got tested for h.pylori and ulcers got negative results and then he asked if I wanted to get an endoscopy, I said okay, not knowing that it will take 3 months to get in... The doctor suspected a Hiatal hernia.

But I have been researching and I match to celiac symptoms, I'm on my first week of gluten free, and I felt a lot better except for tonight as I have bad reflux.

I just need some help in knowing, am I doing the right thing, and will it get better?? I just want to feel better.

Sorry about the life story :P

Xx

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tom Contributor
tom
Posted

Surprised the Dr didn't mention celiac. Hiatal hernia & everything else fit.

3 months is awful long before next medical iteration. Is it possible to get in for a blood draw for celiac tests before your new gluten-free diet makes the testing highly unreliable. The tests don't work right w/out the gluten.

If the Dr doesn't consider celiac until after the endoscopy in 3 mos, he'll then have to put you on a gluten challenge to try to get valid tests (w/ high false negatives anyway) & if you really have celiac it'll probably be miserable or worse.

My point is I think you'll be far better off if your Dr knows ASAP that you suspect celiac & that you should have the blood panel asap.

Glad you're feeling better so far & hope it gets figured out for good.

Ebonyjade93 Rookie
Ebonyjade93
Posted
  • Author

Thankyou for the reply :)

How long is it until gluten gets out of the system, I will defiantly ring up and tell him what I suspect and get a blood test.

I have had strange symptoms aswell, like I bruise and burn real easy, my lips are always dry no matter what I do!!

My dr showed me where my bowel is and it's always in pain.

I didn't know that a hitial hernia was actually a symptom!!

Mateto Enthusiast
Mateto
Posted

Oh my friend! I just went through an extremely similar experience!

Some doctors are quite ignorant, some are just lazy and don't want to help, and some don't know how to. Maybe you should look around for a coeliac-friendly doctor, someone who actually knows what they're doing?

But in that event, and you want to be tested, you will have to go back on gluten in order for it to show up on the results -- but if you don't want to, you don't need to. Some people need the diagnosis, some don't. I'm glad you're feeling better! Don't be afraid to ask questions - I still am.

Ebonyjade93 Rookie
Ebonyjade93
Posted
  • Author

Thanks mateto!!

I'm glad I'm not alone, but not glad for all the people who go through the same as we have. I was thinking about going to another doctor, my current doctor is good, but like you said, he may not seem to know, because I asked him

"do you think it's a food intolerance"

He said no.

So I think a new doctor might be the way to go.

As for testing, I don't mind knowing or not because my main priority is just feeling better!!!

But I hope you are feeling better, and I'd like to hear your experience with everything!!

MitziG Enthusiast
MitziG
Posted

Celiac is very, very common, and it is a shame most doctors don't realize that. If you are to get tested, start eating gluten again now. Your antibodies drop very quickly. Make sure to request the specific list of tests you find on this forum- most doctors won't do all the tests. Lastly, keep in mind false negatives are very common. If the tests say you are not celiac, go back on the diet anyway!

Ebonyjade93 Rookie
Ebonyjade93
Posted
  • Author

Hey mitzyG thanks, if I do feel better idk if I would want to go back to eating gluten for the test, as long as I feel better I'm happy :)

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    • SamAlvi
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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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