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

I Need Some Advice Please!


Tiff

Recommended Posts

Tiff Apprentice

Hello Everyone,

I am on a crazy emotional/ physical roller coaster that is literally driving me nuts. Let me first say that I am 30 years old and I am a stay at home mom to a 19 month old daughter. Back in January of this year my life took a turn for the worst. Out of the blue I had watery diaherra for about a week, horrible insomnia, no appetite, ringing in my ears, severe headaches, horrible joint and muscle pain (especially in my forearms, wrists, and ankles), horrible chest pain, irregular hearbeat, in one month I lost 18 pounds. I now weigh 135 lbs. I also had twitching in my muscles, hives, tingling in hands and feet, hard for me to swallow, itchy palms and feet, stinging pain in my mouth, and recently I have developed horrible eye floaters. I am so scared for my life. I have went to numerous doctors who keep telling me that I am fine. I went to a primary care doctor at least 5-8 times, a rheumotologist, endrocronlogist, and cardiologist. I even went to the ER (which I have never done before) for severe chest pains. The rheumotologist told me it might be costochodritis ( I didn't spell that right, sorry) My rheumotologist found I had a severe Vitamen D deficiency (I was a level 6) I have been taking 50,000 icu of vitamin D once a week for a couple months now. I do feel better but I seem to have good days and bad days. When all of this began I couldn't even function. My family had to stay with me to help me take care of my daughter. And believe me I am one of the strongest most independent women out there. I felt so horrible when I couldn't even have the strength to take care of my daughter. I've been telling people that I chose to give birth to my child naturally, with no drugs. And I would rather give birth naturally again anyday rather than deal with the pain I've been going through.

I should also add that I have Hashimotos Thyroid Disease and I have had it since the age of 14. I have never had any problems until now. And I am just looking for advice or something that could possibly help me. I am my own advocate and believe me I have been through the worst of the doctors. My Rheumo. also told me it could be Lymes Disease, and also said my body would fight it off. But I am being told so many things that I don't know what to believe and not to believe.

I am currently seeing a primary care doctor that is going to try and detox my colon and liver. I haven't started it yet, but I am aprehensive because there are 20 things that he prescribed me to take to detox. I have tried cutting gluten out of my diet and it has helped a little. If I do have celiac would the detox hurt my system?

Any advice would help, thank you so much!!! :)


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



Celiac.com Sponsor (A8-M):



TrillumHunter Enthusiast

Why keep guessing? If you are still eating gluten, go and have a celiac panel drawn. It's no big deal, just a blood draw.

Your symptoms are consistent with celiac. Also, you'll find lots of folks with a dual diagnosis of celiac/Hashimoto's thyroiditis.

I wouldn't do any detox until I had the panel run for celiac.

Just my .02.

Best wishes for your good health.

FMcGee Explorer

I second the proposal to get the blood work done. Super-easy, and then you know. You can decide for yourself whether you want to then proceed to the endoscopy if the results are positive, but at least get the test done!

Also, have you seen a neurologist? They might run some other tests (even if you do have celiac disease, that doesn't mean you don't also have another problem - I have such severe migraines, that come with some of the symptoms you describe, that I will be on medication forever, gluten-free or not). Even if she can't pinpoint a problem, a neurologist could at least reassure you that the only problem is gluten!

Keep us posted, and good luck!

nutralady2001 Newbie

I would also get your B12 checked if you haven't already, tingling hands/feet is a symptom of low B12/ pernicious anaemia , an auto-immune disease once you have one auto-immune disease....... I also have Hashi's............. you are at risk of others

Tiff Apprentice

I want to thank you all for the advice.

Actually, I just had my blood taken for a full anemia panel, B12, and Celiac Disease.

My doctor also to start me on some stuf called Stem Enhance (It supposively helps with the release of adult stem cells)

Has anyone ever heard of this stuff. I just don't know what I'm getting into with this whole detox thing. I've never went through a detox, and I have never known anyone that has.

Thanks again for your advice :D

Foxfire62 Newbie

Get checked for celiac disease as well. You might not have it, but it's worth testing for it. Be sure to have tTg and IgA levels checked as well as small intestines biopsied. Do not go gluten free until you've been tested.

You could also be suffering from hormonal imbalance. You might want to go to an endocronologist if you haven't already. Also, if you do have celiac disease, your serotonin levels might be low, and you could benefit from an anti-depressant that would help there. It was recommended for me too, but I was unable to tolerate the anti-depressant, even at a low dose.

I know what it feels to wonder if you're going to die from all this. I've been going through a lot too, and I am better, although not perfect. I discovered I am somewhat hypoglycemic. Unfortunately, when I went on a protein diet, it backed me up (constipation), which brought on more symptoms. I hope to clean myself out this weekend, possibly; I want to ensure there's nothing else there. I have some magnesium citrate to do this. As for eating now, I've been abstaining from meat, but when I ate some sweets, I went hypoglycemic without the meats. I'm trying to juggle my diet effectively, and I'm having problems.

Please get your hormones (all) tested, including the female kind, especially since you had a baby. This is very scary, I know. I actually had to take a Xanax last night because I became hypoglycemic and couldn't sleep. I try not to take that stuff, but my body has been going through things too.

I don't know if this has helped you at all. I hope someone else can relate best with you. Good luck!

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - 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

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

      nothing has changed

  • 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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • 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:    
×
×
  • 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.