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

Am I Missing Something? Seems too easy

Deades

By Deades
in Coping with Celiac Disease

Recommended Posts

Deades Contributor
Deades
Posted

I am only 7 weeks gluten free and it hasn't been that bad.  I am a silent celiac so I may be glutening myself without knowing it. However, it hasn't been as bad as I thought.  There are a lot of foods I can eat.  When I have had to eat out, I bring my own salad.  At home, whatever I prepare is gluten free.  A friend of mine who had breast cancer a few years back, contracted Parkinson's last year and the. Found out her cancer is back.  It really put this in perspective for me.  I don't have to take pills and deal with side effects, I don't have cancer.  I have to watch my food intake.  I can do it.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Yep, we really have it good when you think about it. The only treatment for us is eating gluten free. No pills, no chemo, no radiation. And there is plenty for us to eat, especially now with so many gluten-free foods on the market that are tasty. Labeling laws make it easier too. 20 years ago, these things were not true and celiacs had to be wary of so much. I am glad to hear you are taking your own food when eating out. Kudos!

Ennis-TX Grand Master
Ennis-TX
Posted
1 hour ago, Deades said:

I am only 7 weeks gluten free and it hasn't been that bad.  I am a silent celiac so I may be glutening myself without knowing it. However, it hasn't been as bad as I thought.  There are a lot of foods I can eat.  When I have had to eat out, I bring my own salad.  At home, whatever I prepare is gluten free.  A friend of mine who had breast cancer a few years back, contracted Parkinson's last year and the. Found out her cancer is back.  It really put this in perspective for me.  I don't have to take pills and deal with side effects, I don't have cancer.  I have to watch my food intake.  I can do it.

Yep I nailed a JAXpac meal prep kit on amazon day and have been leaving my house more with it packing my own gluten-free herbed flat bread, salads, almond butter, and seeds with me. Made a nice vegan  taco soup the other day with my own cheese sauce, keto salsa (watered down low carb version thickened to a sauce with konjac) miracle rice, and jackfruit meat sub, was great with some taco seasoned thin flat breads from my newest recipe used as tortillas. Lifes been good for me this month celiac health wise. >.< everything else is SUPER bad lol.

Gemini Experienced
Gemini
Posted

You shave stumbled onto the biggest secret out there..........the gluten-free diet isn't as horrible as many would have you believe, including the medical profession. There is plenty of good food to eat and the biggest drawback is we have to prepare it ourselves the vast majority of times.  That's the worst part.  :o  And like yourself, I have friends who have much more serious health issues and they do not have the control over theirs as we do over ours. There may be times when you will be faced with temptations you will have to turn away from but you will move on and survive. 

Congratulations on having such a positive attitude!

Dimples Des Newbie
Dimples Des
Posted

I was diagnosed about 7 weeks ago, and have been gluten-free since. A few slip-ups, mind you, that I paid for. 

I was diagnosed on my symptoms only. However, I understand there is a more definitive diagnosis with a blood test.   Is it recommended that I get this done? 

Thanks. 

Ennis-TX Grand Master
Ennis-TX
Posted
16 minutes ago, Dimples Des said:

I was diagnosed about 7 weeks ago, and have been gluten-free since. A few slip-ups, mind you, that I paid for. 

I was diagnosed on my symptoms only. However, I understand there is a more definitive diagnosis with a blood test.   Is it recommended that I get this done? 

Thanks. 

YES get the blood test and the endoscope done if you can, if your doctor will put the dia. formally on your records without these then your blessed in a way. I had a similar issues getting mine done. You have to be eating gluten for 12 weeks at least a half slice of bread a day for the antibodies to build up for the blood testing, 2 weeks for the damage etc to show up in a endoscope.

squirmingitch Veteran
squirmingitch
Posted

So to repeat, you will have to do a gluten challenge which is 12 weeks of eating 1 slice of bread per day for the blood tests or 2 weeks of gluten eating for an endoscopy.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
9 hours ago, Dimples Des said:

I was diagnosed about 7 weeks ago, and have been gluten-free since. A few slip-ups, mind you, that I paid for. 

I was diagnosed on my symptoms only. However, I understand there is a more definitive diagnosis with a blood test.   Is it recommended that I get this done? 

Thanks. 

Celiac disease is not diagnosed by symptoms alone. Why?  There are over 300 of them and many, if not all, overlap with other autoimmune issues or other illnesses.  Learn more about proper testing:

Open Original Shared Link

I am formally diagnosed.  My hubby is not.  His mis-informed doctors told him 16 years  ago to give up gluten.  It worked, but now we do not really know if he has celiac disease or not.  He will be the first to say that I get WAY more support from family, friends and medical.  

I am sorry at your doctor gave you the wrong advice.  Now, you must decide if testing is worth pursuing.  I wish you well.  

Pegleg84 Collaborator
Pegleg84
Posted

I also never had a formal diagnosis, but due to symptoms and family history, I do and will always consider myself having Celiac.
As Cyclinglady said, you do want to get some more testing done if possible. If you're unwilling to do a gluten challenge, there may still be traces enough after 7 weeks to come up positive (worth a shot), or other conditions with the same symptoms should also be investigated.

Anyway, back to the OP, yeah! It is that easy! When I went gluten-free 8 years ago I was feeling noticeably better by the end of a week! It took a long time to figure out all gluteny traps you can find yourself in if not careful, but man, if I only had to worry about gluten I would be soooooo happy. Of course, first came dairy, then came soy, then came a few other weirdo things that my body just won't tolerate. But even that just means: if it makes you feel like crud, don't eat it. Simple.

If only the same thing worked for Fibromyalgia (oh! So it isn't gluten making my body cramp up into horrible aches. Good to know)

But yes, it definitely puts things into perspective. It's not cancer. It's not dehabilitating. We don't need to take drugs. We don't even need to eat expensive special food (though a gluten-free baked treat is always needed on occasion). Not so bad.
Keep it up and it will only get better!

 

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. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. 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...
    3. 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...
    4. 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...
    5. 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...
  • 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

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • 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/   
×
×
  • 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.