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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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    • trents
      Medication

      By trents · Posted

      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      Medication

      By knitty kitty · Posted

      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      Medication

      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Medication

      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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