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

So Frustrating...

JacqT

Recommended Posts

JacqT Newbie
JacqT
Posted

First of all, I don't have Celiac. But I've been told by someone who does, that my symptoms sound a lot like his...

So I've had digestive issues for over 10 years now. I've been dealing with constipation, bloating, nausea, all of that fun stuff. (I've also been diagnosed with GERD, and my GI said my esophagus is very scarred)

Anyway, I've been tested for h.Pylori, had about 5 ultrasounds to check my gall bladder and all those insides, had a barium swallow (is that what it's called?). All of those have come back negative. I talked to my family dr about my issues, again, and asked if I could get tested for celiac. He said "good idea" and ordered a blood test, which came back negative. (This was before I knew you had to have gluten in your system). I've been gluten-free for a couple of years and for the most part I've been feeling better. (By the way, I've been seeing a GI for about 2 years now) so, my GI ordered an endoscopy and that showed no signs of celiac, but then after that, he wanted me to get a blood test for celiac, again. I couldn't understand why. And that came back negative.

A couple weeks ago we were at a birthday party. There was a person making pizzas and handing out slices, fresh. Smelled so good, but I just stuck with a salad. But, when we left, my kids brought home a couple slices. I was STARVING, because a salad can only hold you over for so long, so I ate a few bites of my daughter's pizza. On the way home I got so bloated and looked 6 months pregnant. Got nauseous. My head started feeling fuzzy. I couldn't even make it home. Had to pull into a parking lot and asked my sis in law to pick us up (me and my 3 children).

And this is what happens when I have been "glutened". It doesn't happen that often because I only cook gluten-free. But if we go out or eat at someone's house, if I'm not careful, I feel horrible. And it lasts for about 4 days. I can't even get out of bed.

Does this happen to anyone else? I just hate it. I can't afford to be in bed for 4 days. I don't know what else to do.

Like right now, I'm feeling bad. I thought I was eating gluten-free, because I let someone use my ingredients (soy sauce) to cook so I could eat too. But I just found out that they had to add in more, so they used the "regular" sauce along with my gluten free sauce.

I know I'm not really asking a question, but I could use some advice

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I don't see how you could know that you don't have Celiac. You were tested while being gluten free. You need to be eating gluten to test for Celiac disease - blood ot biopsy

JacqT Newbie
JacqT
Posted
  • Author

The last blood I had, I was eating gluten for 2 days before getting tested. But from what I read online (multiple sites), you may need to be eating gluten for longer than that. So , who knows...

JacqT Newbie
JacqT
Posted
  • Author

I've also been tested for anemia and diabetes, 3 times each. Negative.

kareng Grand Master
kareng
Posted

The last blood I had, I was eating gluten for 2 days before getting tested. But from what I read online (multiple sites), you may need to be eating gluten for longer than that. So , who knows...

Open Original Shared Link

So you don't know if you have Celiac or not.

JacqT Newbie
JacqT
Posted
  • Author

According to my GI, no I don't. He said my endoscopy showed no signs

kareng Grand Master
kareng
Posted

According to my GI, no I don't. He said my endoscopy showed no signs

I thought you said you weren't eating gluten? Please read the link I sent. That site has lots of good info.

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

Celiac.com Sponsor (A8-M):


JacqT Newbie
JacqT
Posted
  • Author

I will check it out, thanks :)

I ate it for the test. And then again I my moment of weakness (45 minute drive home, and only fast food on the way, which we don't eat).

Well, thanks for listening to my complaining! I really do appreciate any advice

kareng Grand Master
kareng
Posted

I will check it out, thanks :)

I ate it for the test. And then again I my moment of weakness (45 minute drive home, and only fast food on the way, which we don't eat).

Well, thanks for listening to my complaining! I really do appreciate any advice

I guess I missed something. I only saw that you ate gluten for 2 days. If you did a proper gluten challenge before your blood tests and endoscopic biopsy, then you probably don't have Celiac at this point.

LauraTX Rising Star
LauraTX
Posted

Hi JacqT.  Your tests for Celiac were only done with you eating gluten for two days?  If so, that is not long enough (see the link Kareng posted) and your tests could potentially be a false negative.  I highly recommend seeking out proper testing while eating gluten so they can be accurate.

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree with the others. You need to do a proper gluten challenge, a couple of slices of bread a day for at least a couple of months, and then get retested. If your doctor(s) have told you to only eat it for a couple days you need new doctors. It does sound like you could be one of us and seeing as you have children and celiac is genetic it would be a good idea to get properly tested. 

nvsmom Community Regular
nvsmom
Posted

Yes, like Ravenwoodglass said, you need to eat gluten daily for 2 to 3 months prior to blood testing, and 2-4 weeks prior to the endoscopic biopsy.  Eating gluten just a couple of times is not enough. You need to be eating gluten long term so your body starts a full on attack on your intestines, and only then it has a good chance of getting a positive if you are a celiac.

 

If you get the blood tests, get as many done as possible because false negatives can happen. These are the tests: tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA.

 

Not everyone can make it through the gluten challenge.  Good luck to you if that is the route you choose to go.  :)

JacqT Newbie
JacqT
Posted
  • Author

Thanks so much for all the great feedback everyone!

I REALLY appreciate it

SMRI Collaborator
SMRI
Posted

Step one--find a new doctor

 

Step two- decide if you want to do a gluten challenge

 

if yes, good luck for the next 8 weeks

 

if no, just go gluten free and call it a day and don't worry about a "diagnosis".

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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.