Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,007
    • Most Online (within 30 mins)
      7,748

    kgoss3tt
    Newest Member
    kgoss3tt
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • aperlo34
      How are you feeling now?  I’m 2.5 Months in and feeling similar. Muscles twitching, some cramps in my muscles etc. 
    • Cindy Neshe
      I purchased food items online seeing the gluten-free symbol. No where online did it say the products were cross contamination with Gluten in their facility. Has anyone else found this with products? We need better communication to make sure people who have sensitivity issues properly notified before purchasing the item. I have actually emailed companies and asked about their statement on the product that it is gluten-free but found out their facility is not dedicated gluten-free, which means Gluten can come in contact with the gluten-free food item. I had to call, nothing listed on the product. I know that a "Dedicated gluten-free Facility" will be listed but why are these manufacturers not listing cross contamination? The answer is probably they don't want to be accountable. 
    • Brianne03
      Our daughter was recently diagnosed with Celiac. Everyone else in the family was subsequently tested. My results are the only ones I'm not confident with, despite my doctor saying they were normal. I guess I'm just looking for peace of mind because my research shows that TTG-IGA numbers greater than 10 U/mL are considered positive for Celiac and mine was 11.6 U/mL. I am happy to be wrong and not have Celiac, but need reassurance and expertise either way because my PCP said he was just going by the labs consideration of normal and wasn't sure beyond that. Could the test be indicative of other autoimmune issues, beyond Celiac, because I do have Hashimoto's?  In addition to having another autoimmune disease, I have had a chronic case of "dermatitis" in my genital/rectum area since 2020. I've seen tons of specialists, used many creams, taken pills and vitamins, have had biopsies, allergy tests (patch and skin prick), changed up all sorts of things, etc. with no real answers or solutions to make it go away. I have resorted to using a daily topical cream just to keep it at bay because otherwise I often feel like I am on fire...red, sore, bleeding, and oh so itchy!  The other thing that makes me question my results, is that I did a 23andMe genetic test years ago and it shows I have two copies of a genetic variant indicative of Celiac disease. Just looking for some clarification; thank you!! PS, I've tried figuring out how to attach screenshots of my test results, but no luck.
    • Brianne03
      Thank you for all the helpful suggestions. She has had stomach issues since the day she was born; when a baby projectile vomiting, as a big kid mostly cramping and stabbing pain after eating and just overall feeling of not feeling great...headaches, tired. We've talked to her doctor about it several times over the years; the did some testing when she was about 2 years old, prescribed a few stomach meds over the years that never helped and most recently did a simple blood test and an endoscopy to confirm and voila....answers!! Her iron and vitamin D were both super low. Wish it didn't take so long for her to get some relief, although honestly she's wishing she didn't know because she's already feeling like she's missing out because everything in our world revolves around food. She graduates this year and going to college is going to bring on a whole new level of stress...for her and me. I'm hoping by then she'll be confident in reading labels and advocating for herself and what she can and cannot eat, etc. 
    • Scott Adams
      It sounds like you’re doing an amazing job helping your daughter navigate her new gluten-free lifestyle—it can be a big adjustment, especially for little ones! To address your questions: Increased bowel movements: It’s possible her digestive system is beginning to work better now that she’s gluten-free, and she’s clearing out what wasn’t moving before. Chronic constipation and impaction can take time to resolve fully, and daily Movicol might still be helping this process. Over time, her bowels should normalize as her gut heals, but if the frequent stools persist or seem excessive, it’s worth checking with her doctor to rule out other issues like malabsorption or food intolerances. Pinkish stool color: Changes in stool color can be common after diet changes, but pinkish stools should be monitored closely. If it’s not blood and doesn’t seem to bother her, it could just be due to something she’s eaten—like certain fruits, vegetables, or food dyes. However, if the color persists, worsens, or is accompanied by other symptoms, definitely mention it to her doctor to rule out any underlying concerns. Bloated tummy: A distended tummy from celiac disease can take time to go down as her gut lining heals and inflammation reduces. It varies for every child, but improvements are often seen within a few weeks to months of being strictly gluten-free. Staying consistent with the diet and ensuring she gets all the nutrients her body needs—especially iron, zinc, and B vitamins—will support this process. If the bloating doesn’t seem to improve or worsens, her doctor may want to investigate further. It’s still early days, so keep doing what you’re doing and stay patient with her progress. Keep track of her symptoms, and don’t hesitate to bring up any concerns at her follow-up appointments. Recovery can be a slow process, but most kids with celiac thrive once their gut heals. Sending lots of positive thoughts your way—she’s lucky to have you looking out for her!
×
×
  • Create New...