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

Celiac Friend Advice


tiadhani

Recommended Posts

tiadhani Newbie

A friend of mine who is a celiac recently moved in with me, my boyfriend and myself had been trying to be very careful with gluten foods but after her getting sick a time or two I decided to just start cooking completely gluten free when we ate together. After having switched from eating mostly gluten free I found myself to be feeling a lot better. I have had reoccuring stomach problems, as well as other health issues for what feels like my whole life. After having spoken to her she seems to think that maybe I also have celiac but she says it about a lot of people, maybe shes right or maybe shes wrong but I was just trying to get some ouside advice on the topic. Just for some info on myself, Im 21 and have had reoccuring stomach issues for the last few years, its progessively gotten a lot worse and I had known about Celiac before but I didnt fit a lot of the symptons.

Current Symptons

:Bloating

:Very Gassy, Become gassy almost every single time I eat

:Massive Stomach Cramps

:Irregular Periods, sometimes its so light almost non existant, sometimes its extremely heavy

:Massive Migraines

:Always tired but never able to sleep, more lazy and unmotivated

:Sometimes I have insomnia, followed by boughts where I can sleep like 12+ hrs

:Extreme mood swings, go from happy to sad to crying to laughing like nothing,i its very annoying, my boyfriend is almost to understanding, hes so supportive, I have no idea why he hasnt just up and bolted yet.

One thing I have to mention however is that Im actually over weight, about 5 ft 7 and 220 lbs, where Ive read that alot of celiacs are under weight, and Im not constipated, nor do I have diarhea that often. I do however have BMs probably 4+ times per day, which Im assuming is not normal. Sometimes when I eat noodles, I have a hard time to even climb the stairs to my room to lye down or even sit comfortably in a car. I have a very high pain tolerance so to me maybe a stomach ache is a lot more to someone else, Im really not sure. Im thinking of being tested for Celiac diesase but have read on this forum that there are PLENTY of times that people come up with false negatives. Any input is greatly appreciated. Thanks!! :D


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



Celiac.com Sponsor (A8-M):



The Fluffy Assassin Enthusiast

Celiacs are not necessarily skinny. All your symptoms could be consistent with celiac disease, but of course they could be consistent with other things, too. I think you're going the right way. Go gluten free with your roommate and see if your symptoms get better. If they do, you can always go back on gluten if you feel the need to get an official diagnosis (have to be eating gluten both for blood tests and biopsy) or just stay off gluten and consider yourself self-diagnosed. Regardless, good luck to you, hope you find your answer, and welcome to the board.

PS Celiac symptoms per the Mayo Clinic: Open Original Shared Link

A friend of mine who is a celiac recently moved in with me, my boyfriend and myself had been trying to be very careful with gluten foods but after her getting sick a time or two I decided to just start cooking completely gluten free when we ate together. After having switched from eating mostly gluten free I found myself to be feeling a lot better. I have had reoccuring stomach problems, as well as other health issues for what feels like my whole life. After having spoken to her she seems to think that maybe I also have celiac but she says it about a lot of people, maybe shes right or maybe shes wrong but I was just trying to get some ouside advice on the topic. Just for some info on myself, Im 21 and have had reoccuring stomach issues for the last few years, its progessively gotten a lot worse and I had known about Celiac before but I didnt fit a lot of the symptons.

Current Symptons

:Bloating

:Very Gassy, Become gassy almost every single time I eat

:Massive Stomach Cramps

:Irregular Periods, sometimes its so light almost non existant, sometimes its extremely heavy

:Massive Migraines

:Always tired but never able to sleep, more lazy and unmotivated

:Sometimes I have insomnia, followed by boughts where I can sleep like 12+ hrs

One thing I have to mention however is that Im actually over weight, about 5 ft 7 and 220 lbs, where Ive read that alot of celiacs are under weight, and Im not constipated, nor do I have diarhea that often. I do however have BMs probably 4+ times per day, which Im assuming is not normal. Sometimes when I eat noodles, I have a hard time to even climb the stairs to my room to lye down or even sit comfortably in a car. I have a very high pain tolerance so to me maybe a stomach ache is a lot more to someone else, Im really not sure. Im thinking of being tested for Celiac diesase but have read on this forum that there are PLENTY of times that people come up with false negatives. Any input is greatly appreciated. Thanks!! :D

Ahorsesoul Enthusiast

tiadhani,

You sound just like me when I was in my 20s (long ago). I wish I had a friend/roommate/doctor who would have told me I was celiac then. I have spent 40 plus years suffering with what doctors told me was 'nervous stomach', IBS, colitis and that I just needed to relax.

I think once you are totally gluten free you will be amazed at how well you feel. Being underweight is not mandatory for being a celiac. Just as many celiacs are overweight. You have already done the most important test to see if you are celiac/gluten intolerant--you know you feel better if you do not eat gluten.

I would like to commend you on helping your roommate by cooking gluten free for her.

txplowgirl Enthusiast

Tiadhani,

I have had the same kind of symptoms you describe and diareha also. A am also overweight.

I am 5 ft 2 and weighed in at 205 lbs. Have been that weight for nearly 20 years. Couldn't lose weight no matter what I tried. Have been gluten free for almost 5 months and have lost 30 lbs with out even trying.

My fibro and RA have gone into remission and stomach problems, anxiety and depression are gone.

I believe you will feel like a new woman in a few months. Go for it and don't look back.

JillianLindsay Enthusiast

In my opinion you should go to the DR and get a celiac blood panel done, as well as discuss your symptoms and see what other tests s/he thinks might be necessary. Personally I don't think it is worth making a huge life change if you don't know what you have. Also, if you self-diagnose with celiac disease and don't work with a DR then you could miss something else that could be wrong.

Your symptoms do sound like they could be celiac-related, but nothing beats the advice of a good (and I mean good) medical professional. A lot of celiacs are overweight and you don't have to be skinny to have celiac disease.

Good luck!

Jillian

A friend of mine who is a celiac recently moved in with me, my boyfriend and myself had been trying to be very careful with gluten foods but after her getting sick a time or two I decided to just start cooking completely gluten free when we ate together. After having switched from eating mostly gluten free I found myself to be feeling a lot better. I have had reoccuring stomach problems, as well as other health issues for what feels like my whole life. After having spoken to her she seems to think that maybe I also have celiac but she says it about a lot of people, maybe shes right or maybe shes wrong but I was just trying to get some ouside advice on the topic. Just for some info on myself, Im 21 and have had reoccuring stomach issues for the last few years, its progessively gotten a lot worse and I had known about Celiac before but I didnt fit a lot of the symptons.

Current Symptons

:Bloating

:Very Gassy, Become gassy almost every single time I eat

:Massive Stomach Cramps

:Irregular Periods, sometimes its so light almost non existant, sometimes its extremely heavy

:Massive Migraines

:Always tired but never able to sleep, more lazy and unmotivated

:Sometimes I have insomnia, followed by boughts where I can sleep like 12+ hrs

:Extreme mood swings, go from happy to sad to crying to laughing like nothing,i its very annoying, my boyfriend is almost to understanding, hes so supportive, I have no idea why he hasnt just up and bolted yet.

One thing I have to mention however is that Im actually over weight, about 5 ft 7 and 220 lbs, where Ive read that alot of celiacs are under weight, and Im not constipated, nor do I have diarhea that often. I do however have BMs probably 4+ times per day, which Im assuming is not normal. Sometimes when I eat noodles, I have a hard time to even climb the stairs to my room to lye down or even sit comfortably in a car. I have a very high pain tolerance so to me maybe a stomach ache is a lot more to someone else, Im really not sure. Im thinking of being tested for Celiac diesase but have read on this forum that there are PLENTY of times that people come up with false negatives. Any input is greatly appreciated. Thanks!! :D

haleym Contributor

OMG story of my life.

I have a similar story! My MD suspected celiac back in feb but blood tests were negative, so I didnt really give gluten free much thought until my symptoms became a bit much. When the you-know-what hit the fan with my symptoms and I had had enough, I decided to give my MD's advice to try the diet seriously a shot.

Well, what do you know, its been two weeks and I feel great!

My advice to you: tell your MD that you went gluten free out of respect for your room-mate and found that a lot of your own symptoms were resolved and that you wonder if this means you are gluten intolerant. BUT no matter what, the rule is this: you know what is good for your body, and you have to be the steward of your own health. If gluten makes you not feel good, dont eat it!

You may be overweight because of thyroid issues, which are often autoimmune in nature and can run together with gluten intolerances (like in my case).

Good luck!

MightbeCeliac's Newbie
A friend of mine who is a celiac recently moved in with me, my boyfriend and myself had been trying to be very careful with gluten foods but after her getting sick a time or two I decided to just start cooking completely gluten free when we ate together. After having switched from eating mostly gluten free I found myself to be feeling a lot better. I have had reoccuring stomach problems, as well as other health issues for what feels like my whole life. After having spoken to her she seems to think that maybe I also have celiac but she says it about a lot of people, maybe shes right or maybe shes wrong but I was just trying to get some ouside advice on the topic. Just for some info on myself, Im 21 and have had reoccuring stomach issues for the last few years, its progessively gotten a lot worse and I had known about Celiac before but I didnt fit a lot of the symptons.

Current Symptons

:Bloating

:Very Gassy, Become gassy almost every single time I eat

:Massive Stomach Cramps

:Irregular Periods, sometimes its so light almost non existant, sometimes its extremely heavy

:Massive Migraines

:Always tired but never able to sleep, more lazy and unmotivated

:Sometimes I have insomnia, followed by boughts where I can sleep like 12+ hrs

:Extreme mood swings, go from happy to sad to crying to laughing like nothing,i its very annoying, my boyfriend is almost to understanding, hes so supportive, I have no idea why he hasnt just up and bolted yet.

One thing I have to mention however is that Im actually over weight, about 5 ft 7 and 220 lbs, where Ive read that alot of celiacs are under weight, and Im not constipated, nor do I have diarhea that often. I do however have BMs probably 4+ times per day, which Im assuming is not normal. Sometimes when I eat noodles, I have a hard time to even climb the stairs to my room to lye down or even sit comfortably in a car. I have a very high pain tolerance so to me maybe a stomach ache is a lot more to someone else, Im really not sure. Im thinking of being tested for Celiac diesase but have read on this forum that there are PLENTY of times that people come up with false negatives. Any input is greatly appreciated. Thanks!! :D

I self diagnosised almost the same way you did.

I had been sick with adrenal fatigue for several years and I wasn't seeing much improvement with the regimen my doctor had put me on. After a while I began to get worse. Then my best friend (who was suffering from chronic faituge) was advised to go gluten free. It seemed a pain in the a@@ to me. But once she started to educate me I decided to go reduce the gluten in my diet to protect myself from developing gluten intolerance. Little did I know I would feel better than I'd felt in about 10 years. Just four days after I began avoiding gluten the brain fog that had bemused for nearly two years lifted, my ability concentrate improved and I've only began getting better from there.

Research into gluten intolerance and my family medical history as well as a few accidents confirmed the diagnosis.

To me this a no-brainer: "If a food makes you ill don't eat."

My younger sister self-diagnosised the same way you did based on being my supportive roommate.


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



Celiac.com Sponsor (A8-M):



  • 4 weeks later...
kera87 Newbie

It can't hurt to get tested, it's hard to go by symptoms because they vary so much with Celiac. My friend has it and only had acid reflux. And I was never skinny, never lost weight or anything - it really effects everyone differently. Even if you are tested and its negative, if the diet makes you feel better, stick with it! It's not so bad :)

OptimisticMom42 Apprentice

The newest numbers say that 1/3rd of the human population is gluten intolerant. Or maybe it's just that nobody should eat that stuff. I agree with your friend, everyone has celiacs! Nobody should eat grains.

Archived

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

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

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - 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

    3. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    4. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    5. - 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

  • 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
      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
      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
      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
      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
      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.