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

Gluten Challenge And Tests

across

Recommended Posts

across Contributor
across
Posted

I have been gluten free for six months after trying an elimination diet for my interstitial cystitis, and have experience profound changes in my health and in multiple disease symptoms. As a result, I decided to ask my doctor about being tested for celiac.

 

After reviewing my symptoms, he agreed that I am definitely gluten-intolerant, and told me he thought there was about a 50% chance that I was celiac, and that he wanted to order a blood test. I had done some research before asking him about this, and knew that the blood tests required a gluten challenge in order to be accurate. I asked him twice about the gluten challenge, and he assured me that the tests would come back positive even without doing one if I had celiac disease. I had the tests (sorry, don't know exactly which ones), and they came back negative.

 

Prior to the test, I had eaten some gluten for about three weeks as a result of an extensive plumbing repair (it was hard to fix meals with no water, so I was eating out). So basically, I was six months very strictly gluten free, followed by three weeks of some gluten -- perhaps every other day or so. I was miserable by the end of those three weeks! I'm still dealing with symptoms from that!

 

I really don't know what to do now. I know I would have an extremely hard time handling a longer gluten challenge, and I don't trust the tests I have had. 

 

Has anyone done the gluten challenge and found it worthwhile to get an official diagnosis? My husband is supportive, but my extended family definitely doesn't understand this disease, and is very unsympathetic. They know I had the tests done, and now they'll pretty much think I'm a hypochondriac if I try to get more testing done since the ones I had came back negative. Heck, they were pretty much insinuating that celiac disease itself was a malady for hypochondriacs. Ugh!

 

I'd really appreciate your thoughts and suggestions. I'm at a loss to know what to do next.

 

 

 

 

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

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

Hi across, and Welcome to the Forum.

 

The tests you had really told you nothing.  A gluten challenge needs to be 8-12 weeks.  Since Celiac is an autoimmune disease it takes time for your immune system to ramp up.  Family is family....don't worry about em.  Worry about your health.  If you can't manage a full gluten challenge then you may want to just go gluten free and enjoy the benefits you've already seen.  You fall into the category of may have it or may not.  I would choose the "may have it" and eat appropriately.  If you do in fact have celiac then you would be damaging your body by eating glutinous food.  The diet is not a big hardship and is healthy.

 

Good luck to you

 

Colleen

nvsmom Community Regular
nvsmom
Posted

There are very few people around here who had their celiac disease caught the first time they went to the doctor about it. I think hypochondriac is synonymous with celiac disease. :(

 

I'm sorry your doctor was so misinformed. If a diagnosis is important to you, and you can handle 2-3 months (12 weeks is best) of gluten, then I say go for it. If it's too much, then skip it and go back to strictly gluten-free.  

 

If your family is giving you a hard time, you can stretch the truth a bit.  Saying, "I was tested. It looks like celiac disease," is basically the truth. If they are still not supportive, you'll just need to work around them and bring you own food to family functions.... Most of us end up doing that anyways as very few people really understand the extent we have to go to make safe food. For example, my SIL made gluten-free cookies but she used butter and sugar that was not from a dedicated gluten-free container so I sadly had to skip them - she had good intentions but it wasn't safe enough for me to risk it.

 

Best wishes and welcome to the boards.  :)

BlessedMommy Rising Star
BlessedMommy
Posted

Hi and welcome to the boards!

 

I'm sorry for the hassle that you're going through. It's entirely up to you as to whether to do a gluten challenge or not. 

 

If you do a gluten challenge, make sure that you don't overdo the gluten. Eat a mostly gluten free diet and then add something like one grilled cheese sandwich a day or so. I tried to go cold turkey to eating normal and had very serious complications and wound up in the hospital 10 days into my gluten challenge. I've been gluten free ever since that day.

 

Good luck with whatever you decide!

across Contributor
across
Posted
  • Author

Thanks, all, for your welcome and words of wisdom. I appreciate it!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,542
    • Most Online (within 30 mins)
      7,748
    Carol Zimmer
    Newest Member
    Carol Zimmer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
×
×
  • 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.