Jump to content

  • 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):

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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...