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

New Here

SunnyJB

Recommended Posts

SunnyJB Newbie
SunnyJB
Posted

Hi. I am Sunshyne. I'm 29 and have been searching for an answer to what is wrong with me for over 10 years. I have been told I have:

arthritis

fibromyalgia

periodic leg movement disorder (sleep issue... looks like seizures)

chronic fatigue

asthma

anemia

IBS

Anxiety

Depression

I have been drugged to no avail. Nothing helps EVER. This past bout is going on 7 days strong of left side of my abdomen pain bein so bad that I vomit from the pain. I went to my dr (military family... ) and he gave me MOBIC!!! In the paper work it even says not to use if you have a history of bowel issues. COME ON!

They tend to give me flexoril for "spasms" and Bentyl for IBS... nothing works

I have also had 5 miscarriages. I have two daughters and was in the hospital at least twice a month for Iv drip with the second one. They call it hypermesis.

I am trying so hard to not give up on me... but its rough.

I have scheduled and canceled the intestinal probe three times, because of anxiety issues.

I am in the process of researching the gluten free way of life. My oldest daughter is ADHD so it should her her as well, and my youngest has juvenile rheumatoid arthritis.

Thanks if you read this.

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

Celiac.com Sponsor (A8-M):


KathiSharpe Apprentice
KathiSharpe
Posted

Hi Sunshyne!

What set me on this journey a second time (after being told a few years back that I do NOT have celiac) is a myriad of symptoms all related to hormones - thyroid and female mostly.

A friend who has PCOS, and whose kids have celiac told me that her doctor put her on a gluten-free diet, citing definite links between PCOS and gluten intolerance. It's apparently helping, tho eating gluten-free won't cure it by any means.

PCOS is polycystic ovarian syndrome - like celiac, it's often missed by doctors. Symptoms vary from woman to woman - and many women dismiss them as "normal" or the doc says, "it's just you to be this way" - but they include monthly complications, not ovulating, difficulty conceiving, miscarriage, and often, insulin resistance. When I was finally diagnosed my GYN said that any woman with a history of miscarriage (where they don't know the cause) should be evaluated for PCOS.

Given the gluten link I thought I'd mention it.

The hyperemesis during pregnancy (that's vomiting a lot, right?) - did that involve headaches too? I had that with both of mine so bad that late term abortion was recommended (and doctors were bitten by mad bear mama here <_< ).

SunnyJB Newbie
SunnyJB
Posted
  • Author
Hi Sunshyne!

What set me on this journey a second time (after being told a few years back that I do NOT have celiac) is a myriad of symptoms all related to hormones - thyroid and female mostly.

A friend who has PCOS, and whose kids have celiac told me that her doctor put her on a gluten-free diet, citing definite links between PCOS and gluten intolerance. It's apparently helping, tho eating gluten-free won't cure it by any means.

PCOS is polycystic ovarian syndrome - like celiac, it's often missed by doctors. Symptoms vary from woman to woman - and many women dismiss them as "normal" or the doc says, "it's just you to be this way" - but they include monthly complications, not ovulating, difficulty conceiving, miscarriage, and often, insulin resistance. When I was finally diagnosed my GYN said that any woman with a history of miscarriage (where they don't know the cause) should be evaluated for PCOS.

Given the gluten link I thought I'd mention it.

The hyperemesis during pregnancy (that's vomiting a lot, right?) - did that involve headaches too? I had that with both of mine so bad that late term abortion was recommended (and doctors were bitten by mad bear mama here <_< ).

missed one... I was dx with PCOS at age 15

SunnyJB Newbie
SunnyJB
Posted
  • Author

I thought I had PCOS on my list. Was dx'd with that at age 15.

Tiff Apprentice
Tiff
Posted

Hi. I am Sunshyne. I'm 29 and have been searching for an answer to what is wrong with me for over 10 years. I have been told I have:

arthritis

fibromyalgia

periodic leg movement disorder (sleep issue... looks like seizures)

chronic fatigue

asthma

anemia

IBS

Anxiety

Depression

I have been drugged to no avail. Nothing helps EVER. This past bout is going on 7 days strong of left side of my abdomen pain bein so bad that I vomit from the pain. I went to my dr (military family... ) and he gave me MOBIC!!! In the paper work it even says not to use if you have a history of bowel issues. COME ON!

They tend to give me flexoril for "spasms" and Bentyl for IBS... nothing works

I have also had 5 miscarriages. I have two daughters and was in the hospital at least twice a month for Iv drip with the second one. They call it hypermesis.

I am trying so hard to not give up on me... but its rough.

I have scheduled and canceled the intestinal probe three times, because of anxiety issues.

I am in the process of researching the gluten free way of life. My oldest daughter is ADHD so it should her her as well, and my youngest has juvenile rheumatoid arthritis.

Thanks if you read this.

Hello Sunshine,

Welcome !!

I just want to let you know that this forum is a great start for you. There are alot of people here who can give you great advice, you just have to be patient.

I am also from a military family. I am 30 years old and I have a 22 month old daughter. I have been trying to figure out what is going on with me for the last 8 months. I have not been dealing with symptoms as long as you have, but trust me I have been through lots and lots of pain throughout my entire body. I have been diagnosed with Vitamin D deficiency, which took forever for doctors to find. I recommend you get your vitamins and hormones checked for possible imbalances! Doctors never told me to go gluten free I just found this website and figured what the heck and gave it a try because its the only thing that I can test on my own. (Besides the entrolab which I haven't done yet)

I have been gluten free for 2 months now, and although I do feel better I am nowhere near my old self. I have aches and pains everyday, but they are not as strong as they used to be. From what I have read on this forum, if you are truly gluten intolerant or have celiac it can take up to 2 years for your body to fully recover. I have not given up and I am going to continue the diet. And am also seeing a homeopathic doctor, which I am paying for out of pocket (something we can't afford, but I really need the help), and to be honest all of the natural supplements aren't really helping so far. But like I said I am hopeful that one day a doctor will be able to correctly diagnose me. I just want you to know that I am here to support you because we are all in the same boat here. Were all trying to figure out what is going on with our bodies. I wish you the best of luck and I hope you find some great advice here.

TIFFANY

SunnyJB Newbie
SunnyJB
Posted
  • Author

Thanks Tiff.

I am taking a precursory action, and journaling EVERYTHING I put into my mouth, and every syptom I have ... I'm going to keep doing it as long as it takes to get a dr to test me.

I am going to a new PCM on Wed, with a list of my issues, and a weeks worth of food/symptom journaling in my hand.

I don't think he will make light of it.

My grandpa died of colon cancer and my mom has had polyps removed three times... last time they were precancerous. So I will tell him that too.

Until then I will continue to eat everything as normal and just live with the pain. I HAVE to have a diagnosis or my husband will not support the switch to gluten free "just because you *think* it will help"

He doesn't understand. But... whatever it takes to make me FEEL better, I am willing to do at this point, and if means discord in my marriage, so be it.

Sorry, went off!

Good luck on your search for help Tiff!!

ranger Enthusiast
ranger
Posted

Please don't be so nervous about the endo- it's literally a piece of cake. But, even if you test negative for celiac ( which many have), try the gluten free diet. If your husband balks at first, when he sees the improvement in your symptoms, he'll come around. At least, most seem to. It was confusing to me at first, so I can imagine how confusing it is to a non-celiac. You'll have to learn how to deal with a "mixed" household, but it can be done. Let us know how the endo goes, but, by all means take it and no matter what the results go gluten free.. Good luck

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

Celiac.com Sponsor (A8-M):


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.