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 Celiac.com!
    eNewsletter
    Donate

Just Starting Out...


tio1514

Recommended Posts

tio1514 Newbie

Hello, I will go by Tio (no not the Spanish meaning) I am 25. For as long as I can remember I have been a very sick child, and was always diagnosed as IBS, Depression, and just standard year round allergies. Actually had a Celiac Panel done back in Aug 2011 it came back negative because the doctor said I was not showing signs of malnutrition from the blood test and I was made to fast before the test (not sure why because even the pathologies was surprised doc said to fast and told me that fasting before a celiac test defeats the purpose because the food needs to be in the body to show up). That aside I believed the doctor saying it was just depression as many previous doctors have said it was. Till two weeks ago my Mom got back from a vacation with some friends and one of the ladies she went with had all the same symptoms as me and she had many blood tests come back negative because they always had her fast before them. So finally I started a gluten free diet about two weeks ago seems to be almost a 180 flip from how I felt before. I have so many symptoms, but some seem to be different from most I have read. Some of mine are within minutes after eating gluten I start coughing because my allergies start acting up start stuffing up and hard time breathing, never been able to sleep for a very long time started having to take sleeping pills back in Aug, anxiety, bloating, and then all the stomach discomfort and diarrhea.

So now here I am because as far as I know I am the only one in my family that has this problem though now that I look back some on my Father's side of the family could have had this was just never diagnosed, both my father's parents died from colon cancer, and cousin has Crohn's that has now turned into Colon cancer.

So any tips would be very helpful, specially with label reading. So far I just go into the grocery store with the mind set if I can't read the label I won't buy it. So all I buy is meat, veggies, fruit, potatoes and rice. It just gets confusing when it comes to the shampoos and all that.

~Tio~

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

Actually, you're right about those labels-simply walk by them and buy natural, whole foods. When you start to go gluten free, it's much better to eat whole foods: fruits, vegetables, dairy, meat, nuts, etc. After a few months, you can feel free to buy certified gluten-free crackers, breads, and other processed foods. Don't bother with the labels--just buy the foods that say that they're certified gluten free.

As for shampoos, Desert Essence Organics' line of shampoos and creme rinses are all gluten free.

Tio, it appears that you're one of us....

Link to comment
Share on other sites
Razzle Dazzle Brazell Enthusiast

Hi Tio!

Welcome to the board. I am glad you were able to find out for yourself what is bothering you despite unreliable experiences with the healthcare system. So many of us have experienced similar troubles. As far as advice goes, you are probably doing the best thing by eating fresh fruit and vegetables to start out with. I wish I had done that because I had other sensitivities surface when I went gluten free and couldn't figure out what it was. Besides that, eating whole foods cuts down on risk for cross contamination. When you verge into buying processed gluten free foods, do yourself a favor and only buy things that are certified gluten free or made specifically in a facility that avoids top allergens or gluten.

Shampoo is kinda debatable I suppose; it is impossible to avoid traces of gluten running down into your mouth, so I personally think it is best to have that gluten free too. Hand soap, I use dawn with no problems that I can see. I use plain shea and cocoa butter lotions.

Well that's a start I hope. You will learn how sensitive you are and what brands you can trust and not trust, but just in case you do not know, most of us seem to become more sensitive as our immune systems recover and strebgthen. Do not be shocked or mislead if that happens to you.

Link to comment
Share on other sites
tio1514 Newbie

I hope I am okay with the shampoos and conditioner I have, I don't see gluten or wheat on the label. Its nice that my mom is being helpful also, she is keeping gluten free snacks in her house for when I come to visit and started cooking gluten free meals that I can eat when I am there. As far as all the whole foods that was not so hard for me, my mom and I have always been cooking from scratch people, and I was never really a person that ate out much. I also can't stand fast food. It is just I have always been the bread and pasta lover... But if this is what it takes for me to feel better then its what I must do to stay well.

Do have a question, as far as vitamins go the one I normally take has wheat in it, and mom always tells me that since I only take one a day its not a big deal since the last time I was at the grocery store all the gluten free vitamins were not as complete as the one I currently take. So is my mom wrong and its worth changing? If so any good complete brands out there?

Link to comment
Share on other sites
rosetapper23 Explorer

Yes, your mom is wrong--you canNOT take a multi-vitamin with wheat in it. Absolutely not! You should get your vitamin/mineral levels tested and take only those nutrients that you're deficient in. With a whole-foods diet, you should be able to get most of what you need from your food. If you're unable to absorb any nutrients, your tests should show you which ones you need to supplement.

Link to comment
Share on other sites
tio1514 Newbie

The blood test that was taken said all I needed was iron, because I don't really eat red meat, and all other levels were normal. Looks like that is going in the bag of gluten items to take to her house :)

Link to comment
Share on other sites
Razzle Dazzle Brazell Enthusiast

I dont think you quite understand how serious the condition is. It can take just a small breadcrumb to cause damage to your body This is not like a simple allergy. Autoimmunity is a whole different thing. if you continue to expose yourself to purposeful glutening as well as cross contamination from kitchen surfaces that have handled gluten, you could be looking at developing other problems. Take it from me, it is not worth it. Many of us learned that lesson the hard way, including those who were self-diagnosed.

Link to comment
Share on other sites

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,225
    • Most Online (within 30 mins)
      7,748

    jhand
    Newest Member
    jhand
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...