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

Bad Day.

Aetheana

By Aetheana
in Coping with Celiac Disease

Recommended Posts

Aetheana Newbie
Aetheana
Posted

I'm still new to this whole celiac disease, gluten free thing and I did something really stupid yesterday. See, I haven't been officially diagnosed, and sometimes I feel like I'm a hypochondriac thinking I'm gluten intolerant when I just can't lose weight and am tired... you know, finding something to BLAME it on instead of just taking responsibility for myself.

Well, I had been good and gluten free for a week and a half. Not a long time, I know, but I was doing good. Still fatigued, but no GI problems. Yesterday, I succombed to dear husband and had pizza, delicious delicious gluteny pizza. I even had freaking gluten free pizza crusts in my freezer! but dh said it wouldnt taste as good as normal pizza.

Good lord was it a bad idea! D, flatulence, nausea. I stink today because of my problems. This whole thing sucks.

Should I take that as a sign I really have gluten intolerance or is it just a coincidence? Maybe I'm still in denial about having to eat this way for the rest of my life.

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

Celiac.com Sponsor (A8-M):


debbiewil Rookie
debbiewil
Posted

If you're questioning it, then you probably need to get the tests done, for your own satisfaction. If you won't go gluten free without proof, then you need the proof. You will have to continue to eat gluten until you can have the tests done, but I'd try to get them done as soon as possible.

I went gluten free without the tests, becasue I KNEW it was right for me. I was going to try it for a week or two, then see about getting tests if it seemed warrented. I knew it would take months to get appointments with the gastroenterologist anyway, so figured if I seemed to do better gluten free, I'd still have plenty of time to eat gluten before I could have the test. Anyway, I felt SO much better with just a few days gluten-free I knew there was NO way I was ever going back to eating gluten. But that's me. Since you seem to need the tests to commit to the diet, then I think you should schedule the tests ASAP and continue to eat gluten until then.

Debbie

Lollie Enthusiast
Lollie
Posted

You said you didn't have the GI problems on gluten-free? What were your symptoms prior to going gluten-free? What made you think you were gluten intolerent? I'm just asking because, I am pretty much self dx. I had tons of pain prior to the diet. I decided to get the testing-quite expensive, even with my insurance- and uncomfortable-I had the colonoscopy as well as the upper GI and blood work..... Unfortunately, my doc doesn't seem to know what he's looking at and I don't understand my levels..... But after the testing I went gluten-free- it's been about 2 months and I'm really doing better. I figure the proof is in the pudding- I feel better gluten-free, and that's all that matters. Everyone is different. You have to do what is best for you. But for me, feeling better is what matters. As for your husband- sorry he isn't supportive. My husband is the one that found out about celiac and persuaded me to try the diet....He watched me in pain, fatigue, losing incredible amounts of weight, etc......for 10 years. By then he was willing to do what ever he could to help me. We had homemade gluten-free pizza's this weekend. He said he thought they were great......

Good luck! Let us know what you decide to do!

Lollie

P.S. I have alot of good recipes and tips for making things. Feel free to pm me if you want some of them....

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm still new to this whole celiac disease, gluten free thing and I did something really stupid yesterday. See, I haven't been officially diagnosed, and sometimes I feel like I'm a hypochondriac thinking I'm gluten intolerant when I just can't lose weight and am tired... you know, finding something to BLAME it on instead of just taking responsibility for myself.

Well, I had been good and gluten free for a week and a half. Not a long time, I know, but I was doing good. Still fatigued, but no GI problems. Yesterday, I succombed to dear husband and had pizza, delicious delicious gluteny pizza. I even had freaking gluten free pizza crusts in my freezer! but dh said it wouldnt taste as good as normal pizza.

Good lord was it a bad idea! D, flatulence, nausea. I stink today because of my problems. This whole thing sucks.

Should I take that as a sign I really have gluten intolerance or is it just a coincidence? Maybe I'm still in denial about having to eat this way for the rest of my life.

You basically did a gluten challenge. Now you know what will happen and that yes you do react. I agree though that you may want to go ahead and get tested if you feel that is the only way you can stay gluten-free. Please be aware that false negatives do occur though. For myself and our family we did both dietary challenge and blood tests and one endoscopy but the sickest one (me) never came up positive on any bloodwork.

Aetheana Newbie
Aetheana
Posted
  • Author

Yea, i figured that it was a sort of gluten challenge.

the reason i think im gluten intolerant/celiac is that i have hypothyroid and fibromyalgia. I also have blood markers for rheumatoid arthritis and lupus. My mom is really bad off with hypoT, lupus, arthritis and just in general she is always miserable. I don't want to be like her when i grow up!

i had blood tests drawn and i get the results of them tomorrow. Yes, i was eating some gluten when i had them drawn, but i have a feeling its going to be a false negative. i didnt eat that much gluten for quite some time when i had the blood drawn (trying to follow an atkins type diet).

i never had many GI problems before, just fatigue, tiredness, crankiness, brain fog, water retention (like noones business! 7 pounds in one night after eating at olive garden!). I attributed them all to the hypothyroid and they got better when i went on meds for it... but slowly, it feels like the meds arent working as well.

more proof i have it is that i dont retain water when i eat things like rice or chocolate (which are high carb, but no gluten) but i do retain water like MAD with wheat products... before i was just attributing everything to carbs in general, but every time i cheated it was with wheat.

dear hubby is supportive today. he said that it was a good test and he wont try to pursuade me to go off the diet any more in the future.

aikiducky Apprentice
aikiducky
Posted
dear hubby is supportive today. he said that it was a good test and he wont try to pursuade me to go off the diet any more in the future.

Well, maybe it was worth it after all. :) That seems to be a common experience, spouses who give you a hard time until they see you really get sick from gluten once. I hope you're not feeling too sick anymore. Remember that it will take a few weeks to get over this gluten challenge, don't expect to be where you were last week for a while now.

You're in the first stage of the process of adjusting to a new lifestyle, namely DENIAL. It's a natural and necessary stage to go through. :D That's all I'm going to say. :D

Pauliina

Lollie Enthusiast
Lollie
Posted

I'm glad your husband is supportive today! :D It really helps when you've got someone right with you to help you along the way! I agree that it was a good test! If your still feeling icky, try to drink alot of water- it will help your body flush out the gluten!

Let us know how your test results turn out!

Lollie

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

Celiac.com Sponsor (A8-M):


Aetheana Newbie
Aetheana
Posted
  • Author

My visit to the doc today was good. My thyroid meds are correct and my levels are good.

The blood test for gluten intolerance came back negative, but that wasnt too surprising to me, i still had the resolve to continue on the gluten free way of living anyway.

but the thing that kicked my a$$ so to speak was the fact that i have candida. :( i also have stressed out adrenals (im still not sure what that means yet.)

so, even though i said the specific carbohydrate diet was too strict, that might be what i have to follow.

im really depressed about it. :( i really thought i could handle the gluten free way of life if i could eat fruit and some sugar, now...

things suck sometimes.

Archived

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

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


  • Member Statistics

    • Total Members
      131,671
    • Most Online (within 30 mins)
      7,748
    Paul1567
    Newest Member
    Paul1567
    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

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.