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

De-lurking With A Couple ?'s

Morrisun

By Morrisun
in Coping with Celiac Disease

Recommended Posts

Morrisun Newbie
Morrisun
Posted

I guess I should give a little background. Was diagnosed with celiac disease May '04 by bloodwork. I've had "stomach problems" my entire life, they've been getting worse the last 10-11 years. Looking back now I've realized that there were clues to my celiac disease waaay back when I was a very young child as my baby teeth came in with no enamel on them at all. :o

Anyway, after my diagnosis I figured that if I didn't go gluten-free that I would just continue to have the usual stomach cramps, "D", etc. We were in the middle of moving from one state to another, my DH was retiring from the military, it was an extremely stressful period of time. I'm not trying to make excuses per say, but I honestly did not realize how seriously I needed to take things and I really regret it now. Since my diagnosis last year I have also been diagnosed with Grave's Disease (Jan '05) and have just recently started treatment for that as it took over 2 months to get in to see an endocrinologist. :(

In the last couple of months I've done extensive reading and it hit me that I really needed to go gluten-free now, can't put it off, etc. And to be quite honest I'm sooo tired of feeling horrible. I know this makes me sound like an idiot but I didn't understand the severity of the issue, I didn't realize that by not going gluten-free it was putting me at risk for a whole host of other issues, cancer etc.

I have now been 100% gluten-free for 3 weeks. I have gotten a new toaster, new pots & pans and I've gotten dual PB, Jelly, Butter, etc so as to avoid CC with my DH who is not a Celiac.

The first week, week and a half of being gluten-free I felt better almost immediately. I had more energy, my stomach wasn't constantly "moving", the "D" had decreased greatly. It was great! Now however for the past week or so I've felt much worse and I can't figure it out. I read labels obsessively, I don't eat anything that I'm not sure about, I'm almost positive that I'm not getting any cross contamination.

I have been keeping a food diary for the last two days (so far) and I'm beginning to think that it might be a problem with Dairy, so today I have avoided all dairy. I'm just wondering how long did it take for most people's symptoms to improve greatly? Was there a big difference right away or was it a gradual improvement over time?

Sorry for the novel....I'll appreciate all input!! :)

Jennifer

Diagnosed Celiac May '04

Diagnosed Grave's Disease Jan '05

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

Celiac.com Sponsor (A8-M):


ianm Apprentice
ianm
Posted

Most will get better over time. It seems that it takes on average 3 months to start feeling better and a good year to be healthy. It took a lifetime for your body to get damaged so it won't heal over night. This lifestyle is not as hard as it first appears. It takes time to learn new habits and break the old ones. Once you get the hang of it you will feel so much better.

Welcome.

KaitiUSA Enthusiast
KaitiUSA
Posted

Yea the problems will go away but it takes time. Mine got alot better after 3 months then i was back to normal a few months after that. Everyone is different with symptoms and healing. Some people have it go away quicker then others. It will be much easier when you get the hang of it...you will find this site very helpful...alot of people on here know more about celiac then 95% of doctors you will find.

I also have graves disease

tarnalberry Community Regular
tarnalberry
Posted

I want to at least say that it doesn't sound like you were an idiot for not knowing how important it was for you to go gluten-free; you were ignorant of the dangers and you've fixed that by finding out. And let's not forget to say shame on your doctors for not informing you!

mela14 Enthusiast
mela14
Posted

Dairy could definately be a problem as it is with most celiacs. It's been about 5 months for me and I am still trying to fine tune my diet.

Give it time and make sure you scrutinize everything. gluten-free can ony help you to feel better.

Hang in there!

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Welcome to this message board!

Tiffany, I wouldn't necessarily say, she was ignorant of the dangers. She just reacted like everybody else, who we tell: "Oh, I have celiac disease, I can't eat this" and they look at you, as if you're from mars. Because people can't know. That's because this is so rare, the awareness needs to raise and the doctors should be more informed. I'd say, it's not her fault. How could she know???

But know, you're doing a great job I guess. Did you also check your toothpaste, if it's glutenfree? Your soaps, shampoos, cremes, makeup, bodylotions??? And a lot of celiacs have problems with dairy at first. This is, because dairy is digested on top of the villi. But when they are gone, this isn't possible anymore. So when you're better, you could try dairy again. You might be able to digest it again.

Good luck and if you have a question just ask.

Morrisun Newbie
Morrisun
Posted
  • Author

Thanks guys! I made an appt. with my Dr. for next week. I want to see if he'll do some additional blood work, check my Iron levels and things like that. I have checked my makeup, toothpaste, etc. Now that I've gotten the new pots and pans I'm pretty sure that my chance of contamination is pretty low. When you've had stomach problems for so long it's so hard to tell if you just sick, or if it's the celiac disease or whatever..ugh!! LOL

Jennifer

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

Celiac.com Sponsor (A8-M):


stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted
When you've had stomach problems for so long it's so hard to tell if you just sick, or if it's the celiac disease or whatever..ugh!! LOL

This is so right! I wish you good luck and keep us posted!

tarnalberry Community Regular
tarnalberry
Posted

I just meant ignorant in the "unaware of" sense of the word, not any of the negative connotations that are sometimes used with that word. :-) Ignorance needn't imply fault! :-)

hsd1203 Newbie
hsd1203
Posted

For me, the first week was wonderful, and then the next 6 months were kind of up and down, in part regardless of what I was eating (I even moved home and had my gluten-free mom cooking for me). I also had to cut out dairy and soy completely for 6 months, and limit fats and acidy foods as they all bothered me.

It gets better but be patient and read every label every time you eat something :)

Hope you're feeling better soon

H

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. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    2. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    3. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    4. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Medications

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fa...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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

    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Gluten tester

      By Scott Adams · Posted

      I am not aware of an air detector for gluten, but Nima Partners sells a device that can detect gluten in minutes in a small sample of a meal or food that you eat. They are also a sponsor here for full disclosure: https://nimanow.com
×
×
  • 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.