Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Progressively Getting Worse...seeing Doctor Tommorow...again

scottyg354

Recommended Posts

scottyg354 Enthusiast
scottyg354
Posted

Ok guys, I know I keep posting on here and am probably annoying the hell out of you but I have a few more questions I need to ask. First off I am going to see my doc tomorrow for my bi monthly checkup (thyroid, bp, ect). We have been discussing my stomach issues. Over the last year I had a colonoscopy and a celiac panel. I was eating pretty much gluten light (as I was not really worried about cross contamination) for about 2 weeks prior to gettng the panel done. It came up negative, with my Gluten/Giladin IgG only the very slightest elevated. My colonscopy also showed no issues in the large bowels. Anway, I have low carbed on an off for the last year since and have seen some relief in my symptoms, when I was on the diet. (Please note I was never a big grain guy to begin with.). When I would go off the low carb my mild symptoms would return, like I said I am not much of a grain guy, maybe a little shake and bake or a sandwhich everyone once in a while but thats about the extent of it. U

I started seeing a dietician about two weeks ago and she has me on a high fiber cereal in the AM (Fiber One, Kashi) and has me eating a lean meat sandwhich on whole wheat for lunch. Well the first couple of day weren't bad. Now recently my left sided pain has returned, its curving around my back, and towards the center of my stomach. I get some burning in the cent of my stomach as well as some naseua. I am constipated probably worse then ever right now, and I keep getting these dizzy spells. I am also starting to experience some odd pains in my arm and leg which I never had before, almost like brief shooting pains that come and go. This part is gross. The stools that I do manage to get out are usually only what I can compare to as a gold color or orange, but they always show up yellow on the toilet paper (sorry for to much info). Only things off on my blood work are my Calcium (278 bottom of range is 280) and my liver ALT was raised (98 were 75 is top of the range),I am also having a current flare up of boils and my thyroid is still elevated @ 5.8 which my levo was just upped to .200 for.

Anyways, do you guys think it would be worth paying for another panel since I was gluten free before the last one? Is the anything else I should ask for? Allerygy Testing? I'm kind of at a loss and am not sure whats causing this. Anyone else have symptoms like these? Like I said my colon was totally clean when I had the colonoscopy, one poly that was it, so I am assuming Crohns and UC are out of the question? Any help would be great. These symptoms are not unbearable yet, but they are getting worse.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

The couple of days before you reacted are not unusual for a gluten reaction. If you do want to do more celiac testing stay on the diet you are now on, with all the kashi and whole wheat bread etc. for a couple to 3 months more and then get the celiac screening done. You could still have a false negative though. When you say your first panel was only slightly elevated was it in the positive range? If it was then you do need to be gluten free.

Honey015 Newbie
Honey015
Posted

Hi! I went gluten free for one month out of curiosity because I have so many symptoms that fit celiac (at least 20). I saw my doctor who ordered the anti endomysial (anti tissue transglutaminase) test, a week later, giving me just a week to eat gluten again. I didn't feel like my symptoms were as bad as I was expecting during the week back on gluten, considering I had had some pretty quick reactions to it when glutened by mistake while gluten-free. My test came back negative, and my doctor has dismissed celiac. Anyway, it's been about five weeks back on gluten now, out of my stubborness to accept the negative result, and I have continued it because I have bought a home test and wanted a better result. Over this last week, my original symptoms are back with a vengeance. The grumbling, bubbling stomach all the time, discomfort and nausea for hours after eating, daily diarrhoea which is yellowy cloloured and floats (nice), and my horrendously itchy elbow rashes are flaring.

I hope this is helpful. Good luck to you.

scottyg354 Enthusiast
scottyg354
Posted
  • Author

The couple of days before you reacted are not unusual for a gluten reaction. If you do want to do more celiac testing stay on the diet you are now on, with all the kashi and whole wheat bread etc. for a couple to 3 months more and then get the celiac screening done. You could still have a false negative though. When you say your first panel was only slightly elevated was it in the positive range? If it was then you do need to be gluten free.

There were three ranges negative, possible (not the exact word but thats what it means) and postive. I was only in the possible range. I forget the exact number but it wasn't to high above negative. Do these symptoms sound like they could be gluten related. I am really hitting a dead end with my problems as nothing is turning up.

scottyg354 Enthusiast
scottyg354
Posted
  • Author

Hi! I went gluten free for one month out of curiosity because I have so many symptoms that fit celiac (at least 20). I saw my doctor who ordered the anti endomysial (anti tissue transglutaminase) test, a week later, giving me just a week to eat gluten again. I didn't feel like my symptoms were as bad as I was expecting during the week back on gluten, considering I had had some pretty quick reactions to it when glutened by mistake while gluten-free. My test came back negative, and my doctor has dismissed celiac. Anyway, it's been about five weeks back on gluten now, out of my stubborness to accept the negative result, and I have continued it because I have bought a home test and wanted a better result. Over this last week, my original symptoms are back with a vengeance. The grumbling, bubbling stomach all the time, discomfort and nausea for hours after eating, daily diarrhoea which is yellowy cloloured and floats (nice), and my horrendously itchy elbow rashes are flaring.

I hope this is helpful. Good luck to you.

See, I'm more on the C side then diarrhea. Although I do get D occasionally and it is very large movements. Most of the time my bms are off colored and mishaped if I can go at all.

lost36 Newbie
lost36
Posted

I also have the same symptoms. When you mentioned the yellowish gold on the tissue paper I have the exact same thing. Does this have a strange ammonia like odor also? No one can tell me what it is

scottyg354 Enthusiast
scottyg354
Posted
  • Author

I also have the same symptoms. When you mentioned the yellowish gold on the tissue paper I have the exact same thing. Does this have a strange ammonia like odor also? No one can tell me what it is

This is going to sound gross but yes, it almost has like a burnt metal type smell to it. Really odd. I don't know.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ciamarie Rookie
ciamarie
Posted

It certainly sounds like it very likely could be related to gluten. I agree with what ravenwoodglass said. Do you have the actual test results with reference ranges, or can you get them, and then post them here? I know there's one test (IGG I think?) that is most specific to gluten antibodies, so if it's elevated at all (equivocal I think they call it), it's still pointing to gluten intolerance if not celiac. If it was at all elevated while you were gluten lite, that would be an even stronger indicator, imo.

If that's the case, you could save yourself from having to go through more testing and get to give up those 'healthy whole wheat' sandwiches.

scottyg354 Enthusiast
scottyg354
Posted
  • Author

It certainly sounds like it very likely could be related to gluten. I agree with what ravenwoodglass said. Do you have the actual test results with reference ranges, or can you get them, and then post them here? I know there's one test (IGG I think?) that is most specific to gluten antibodies, so if it's elevated at all (equivocal I think they call it), it's still pointing to gluten intolerance if not celiac. If it was at all elevated while you were gluten lite, that would be an even stronger indicator, imo.

If that's the case, you could save yourself from having to go through more testing and get to give up those 'healthy whole wheat' sandwiches.

Went to see the doc. He has me doing another Celiac Panel in about 6 weeks. Also checking Vitamin D, B12 and Folate as well as an abdominal ultra sound, hepatitis panel and hida scan. So this should at least hopefully give me some answers. He also said that if my labs for my thyroid aren't lower this time around that we are going to try out Armour.

llama3 Apprentice
llama3
Posted

I don't know, but

Now recently my left sided pain has returned, its curving around my back, and towards the center of my stomach. I get some burning in the cent of my stomach as well as some naseua. I am constipated probably worse then ever right now, and I keep getting these dizzy spells.

those are all symptoms that I get when I eat gluten.

Let us know how the panel goes.

scottyg354 Enthusiast
scottyg354
Posted
  • Author

I don't know, but

those are all symptoms that I get when I eat gluten.

Let us know how the panel goes.

I'm not going to call the pain severe. Its more like an odd pressure feeling, enough that it is annoying. When it hits my back it starts to get annoying and the burning nausea seems to come in segments. Not consistantly but every so often I'll get an attack of it.

llama3 Apprentice
llama3
Posted

I'm not going to call the pain severe. Its more like an odd pressure feeling, enough that it is annoying. When it hits my back it starts to get annoying and the burning nausea seems to come in segments. Not consistantly but every so often I'll get an attack of it.

That sounds similar to what happens to me. I get the nausea in waves and sometimes it feels more like cramping, sometimes it's more vague and dispersed. The pain in my left side can also be either so vague that I'm not sure if it's actually there, or really concentrated like being stabbed.

scottyg354 Enthusiast
scottyg354
Posted
  • Author

That sounds similar to what happens to me. I get the nausea in waves and sometimes it feels more like cramping, sometimes it's more vague and dispersed. The pain in my left side can also be either so vague that I'm not sure if it's actually there, or really concentrated like being stabbed.

All I know is I hope I find out what the hell it is.

lost36 Newbie
lost36
Posted

All I know is I hope I find out what the hell it is.

I'm still trying to find out whats wrong with me too. When you mentioned about the yellowish subtance with the stool is what got my attention. I have the same thing and havent found many answers on the net about it. Mines has an ammonnia/chemical odor and the only thing that i've found on the net that causes that is Bacteria overgrowth of the small intestines. That can cause a whole host of other symptoms also like , constipation/diarhea, bloating, adomenal pain, gassy and weight loss. Please keep us updated and hope everything goes well.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm not going to call the pain severe. Its more like an odd pressure feeling, enough that it is annoying. When it hits my back it starts to get annoying and the burning nausea seems to come in segments. Not consistantly but every so often I'll get an attack of it.

I've been getting this as well, but the pain radiates to the right side of my back. I'm guessing it might be gallbladder in my case? I was given a HIDA scan and my function is at 30%. I was told to consult a surgeon about having it taken out...which I don't want to do.

The condition is called billiary dyskenesia, and can be made worse by PPI medications, so I went off mine to see if it's gets better. It's pretty common for Celiacs to have GB problems.

Hang in there...it's scary not knowing what's going on. I hope they can figure this out for you.

Lori2 Contributor
Lori2
Posted

I am also having a current flare up of boils and my thyroid is still elevated @ 5.8 which my levo was just upped to .200 for.

I was just reading another thread about boils. Check this out:

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Ginger38's topic in Related Issues & Disorders
      15

      Shingles - Could It Be Related to Gluten/ Celiac

      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk. I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me. Soon after diagnosis I suffered...
    2. Tazfromoz
      - Tazfromoz replied to Ginger38's topic in Related Issues & Disorders
      15

      Shingles - Could It Be Related to Gluten/ Celiac

      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until...
    3. hjayne19
      - hjayne19 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Celiac Screening

      Hi all, Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was...
    4. yellowstone
      - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive...
    5. Churro
      - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,076
    • Most Online (within 30 mins)
      7,748
    Monica L
    Newest Member
    Monica L
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Shingles - Could It Be Related to Gluten/ Celiac

      By cristiana · Posted

      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      Shingles - Could It Be Related to Gluten/ Celiac

      By Tazfromoz · Posted

      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
    • hjayne19
      Celiac Screening

      By hjayne19 · Posted

      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning?

      By yellowstone · Posted

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.