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Symptoms

Zachm

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Zachm Contributor
Zachm
Posted

Hello (: Ive been on here a few times and made a couple posts, but I was wondering if I could really get opinions on other sufferers. I got "diagnosed" back in late July from a few blood tests and the doctor felt sure that's what it is. Before July I was just irregular mainly. I went from being a one time a day person to 5,6, or 7 times a day and sometimes not going at all certain days and just an "icky" feeling in my stomach like I can constantly go. So I start going gluten free and my stomach feels VERY bad usually constantly. I watch out for dairy, wont put anything in my mouth or hands that doesn't read gluten free and I didn't make myself(on a couple occasions Ive eaten out but Ive been anal about it. But since going gluten free Ive experienced the worst pains about 7-10 times now. Always about 4am I get woken up by horrible stabbing cramps above my belly button and diarrhea that's starts out like "this is going nowhere but just cramps, then oh wait nope"   and it wont go away and I usually take immodium and fall asleep. I went to my GI the first time a couple days ago and he really hasn't said anything but he wants to do an endoscopy, but my insurance did the loveliest thing and dropped me and between 17 credit hours at college and remodeling a home I have no time to really look up insurance and when I do they say it cant start til November and I do want to get this figured out before then, hopefully. Don't be shy to comment, I just want opinions. Oh and if it makes a different, I have a really loud stomach and for some reason have been getting what feel like uti's but they make no sense...?

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cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you lost your insurance (been there and done that).  So, you had a positive blood test in July.  You saw the GI, but without insurance you can not do the endoscopy.   You already went gluten-free, if I recall.    Consider staying gluten-free until you can do a gluten challenge when you are not in school and have insurance.  You may have to have it earlier and without the challenge if you do not get relief from your symptoms.  Things like SIBO or colitis need to be ruled out.  Continue to avoid milk for now.  Watch and be sure everything you eat is gluten-free.  Avoid processed foods as much as possible -- like those Cherrios!  

The diet learning curve is steep.  That is one reason for a slow recovery.  I know you are in pain.  I am so sorry.  Keep at it and you will feel better soon.  

 

bartfull Rising Star
bartfull
Posted

Are you putting up sheetrock? Sheetrock mud is full of gluten and when you sand it it gets in the air like flour dust. You breathe it in and it gets in the back of your throat where you swallow it.

Also, if you haven't already (or even if you have), go to the coping section and read the Newbie 101 thread.

cyclinglady Grand Master
cyclinglady
Posted

Are you putting up sheetrock? Sheetrock mud is full of gluten and when you sand it it gets in the air like flour dust. You breathe it in and it gets in the back of your throat where you swallow it.

Also, if you haven't already (or even if you have), go to the coping section and read the Newbie 101 thread.

Great catch, Bartie!  

Galixie Contributor
Galixie
Posted

I really know nothing on this subject but the first thing I thought about when reading your description was 'could it be a gallbladder problem?'

The insurance thing is a drag, but if you put off signing up for it, it will take even longer for you to be covered. Since specialists often have fairly long waiting lists, it might work out to sign up for insurance now, find out what specialists are covered and immediately book an appointment for the day your coverage begins.

Obviously, if it feels like it is becoming life-threatening you should get to an ER despite the lack of coverage. Most hospitals will let you work out a payment plan. That sounds like such a unpleasant pain. I hope you can get it diagnosed soon.

Zachm Contributor
Zachm
Posted
  • Author

I really know nothing on this subject but the first thing I thought about when reading your description was 'could it be a gallbladder problem?'

The insurance thing is a drag, but if you put off signing up for it, it will take even longer for you to be covered. Since specialists often have fairly long waiting lists, it might work out to sign up for insurance now, find out what specialists are covered and immediately book an appointment for the day your coverage begins.

Obviously, if it feels like it is becoming life-threatening you should get to an ER despite the lack of coverage. Most hospitals will let you work out a payment plan. That sounds like such a unpleasant pain. I hope you can get it diagnosed soon.

Ive honestly wondered about that. I am twenty one and my sisters went at about 22 and had to get it removed, my moms was bad at about 30, so I wouldn't doubt it and thankfully we just paid out of pocket to visit the specialist because it took over a month to get that appointment and we couldn't give that up. It seems unbearable some nights and Ive honestly thought about going to the hospital, but who knows

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    • Wends
      Inconclusive results

      By Wends · Posted

      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

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    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
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