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

Grrr...

BelievinMiracles

Recommended Posts

BelievinMiracles Explorer
BelievinMiracles
Posted

Hi, I'm new to this whole thing. I've been having a bunch of issues for about 2 years and I have been feeling generally ill pretty much my whole life. I've had test after test done and everything is negative or looks "fine."

I just want to vent how frustrated I've been for the past two years. Doctors always think they know everything. They always tell me I have acid reflux...Dude! The pills don't work...accept it and move on and fix me! lol! No but seriously it seems like they never listen to me to what I have to say and they look at me like I'm a total paranoid freak. They also told me I have IBS which could be true partly but I don't react to any of the food they list as bad. For example I'm not a tomato eater, I just started becoming a coffee drinker a month ago (work did that) and I haven't really eaten chocolate until last year, and I've had symptoms way before that. Doctors and friends have made me feel like a hypochondriac and sadly sometimes I believe it. I think it was because I listed 20 different types of symptoms. But I know my body very well and something isn't right with it. I mean I thought it was common to have diarrhea up until high school until I talked to some friends and they say they rarely have it. And my rumbly gut, well I always told the boyfriends it was because I'm hungry and it was my stomach. I didn't want them to know I was silently farting! It wasn't until my mom looked up Celiac Disease that I looked into that, and surprising it tied my weird symptoms all together. Sometimes I don't know if I'm really not feeling good or if it's "all in my head." And when I look back at the rest of my symptoms I catch myself thinking, maybe that didn't happen or it wasn't as bad as I thought back then.

After years of testing and xrays and blood work, low and behold I just had a x-ray that showed about a fistful of gas in my stomach and all in my intestines. Sadly I was so! excited to hear that something was slightly abnormal (isn't that sad??). Maybe I was right this whole time...lol! She said that I wasn't digesting my food. So she recommended I go on a gluten-free diet, even though my gluten test (don't know which one it was) turned out negative.

It can be frustrating for me sometimes because there isn't a "test" that tells me what I have. Sometimes I feel like I'm going crazy or that I'm exaggerating. I always have to go back and remember what I've been through and how sick I was/am, and how happy I was back in the day if I had just one normal bowel movement, if one at all. Because of the no proof of a problem, I catch myself wondering if I really need or should be on this diet or is it in my head that I feel the diet is working because I'm feeling better. I just feel crazy right now and really feeling down. I always thought that I'd just feel sick for the rest of my life. I have really high hopes for this diet. I just want to feel good again.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

I completely understand. For a while I thought that the gluten-free diet worked only because I wanted it to. And what if I was just crazy? I knew there was something wrong with me, too, but all my tests were normal also.

But I kept getting better and better. And I finally realized (after a few intentional glutenings) that I really had found the answer. And one day a doctor would listen. I honestly didn't think it would be so soon.

Trust your gut (pun intended :lol: ). We do know our bodies better than anyone else, including any specialist. They have the book smarts (sometimes...) and we have the knowledge of our bodies. So, if you believe that Celiac is your answer, and your belief is founded on improvement on the diet, then stick to it. If nothing else, you'll feel better. And eventually you'll find the right doctor. I told my story to quite a few before one finally accepted that I had figured this out and that I was right.

Link to comment
Share on other sites
KristaleeJane Contributor
KristaleeJane
Posted

Have you ever had a biopsy?? That would be the real test to get done, if your not digesting your food properly and you have had blood work already. The only crappy thing is you have to continue eating gluten until the biopsy.

Good Luck

KM

Link to comment
Share on other sites
Juliebove Rising Star
Juliebove
Posted

I know what you mean. I spent my whole life sick to my stomach and just thought this was normal for everyone. Then at age 46 I was diagnosed with food allergies. Not long after that, I was diagnosed with acid reflux and gastroparesis. Now I am rarely sick to my stomach. And no more sinus and ear infections. I used to keep a box of Kleenex in every room in the house, also in my car, and had to keep about a dozen extra boxes around because I went through them so quickly. Now I only have to buy them if we have a cold, or for a couple of weeks during the start of allergy season.

Link to comment
Share on other sites
LuvMoosic4life Collaborator
LuvMoosic4life
Posted

YEP!!. same here. I feel like I am going crazy sometimes! I am self diagnosed and havent even talked to any doctor about it b/c I know they wont really do anything anyways. I told them in the past about my digestive problems but they made up some wierd reason for it- like at 17 I told my doc I have really bad heartburn after lunch everyday at school...she said there is no reason to have heart burn at age 17 and said it must be caused from playin my instrument (clarinet). what????????

I have had D and gas my whole life and just thought it was normal because my dad had it really bad also, I grew up with it...then i get to college and realize I was avoiding being social over horrible horrible gas problems/bloating/diarhea..ect.ect..I thought "who does this?" All my other friends seems fine....then someone mentioned gluten to me....so glad they did!!!! but I still question myself sometimes...even though I question myself I don't even desire to pick up anything gluten again! so I know I'm doing the right thing.

Link to comment
Share on other sites
BelievinMiracles Explorer
BelievinMiracles
  • Author
Posted
Have you ever had a biopsy?? That would be the real test to get done, if your not digesting your food properly and you have had blood work already. The only crappy thing is you have to continue eating gluten until the biopsy.

Good Luck

KM

I did have an endoscopy and a colonoscopy and they did take a biopsy but I don't know from where. All they told me was that I had a lot of inflammation. I thought it was from my stomach lining but I could be totally wrong.

And thank you all...I don't feel as crazy knowing there are other people like me...

Link to comment
Share on other sites
IMWalt Contributor
IMWalt
Posted
I did have an endoscopy and a colonoscopy and they did take a biopsy but I don't know from where. All they told me was that I had a lot of inflammation. I thought it was from my stomach lining but I could be totally wrong.

And thank you all...I don't feel as crazy knowing there are other people like me...

Yep. Don't feel bad. I spent years thinking it was normal to have cramps, gas, D until my daughter was diagnosed with celiac disease and I started researching it. Since going gluten-free, I am amazed that it took me so long. Years ago I told my doc I had bad cramps and gas, and he just said "Hmmmmm". My blood and biopsy were negative as well, but I have no doubt. I have "tested" myself a number of times by eating gluten, and the result is always the same. As long as I eat gluten-free, all is well. Good luck!

Walt

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted
I did have an endoscopy and a colonoscopy and they did take a biopsy but I don't know from where. All they told me was that I had a lot of inflammation. I thought it was from my stomach lining but I could be totally wrong.

So, what was the explanation they gave you for the inflammation? Because something obviously caused it! And the likely culprit is gluten, of course.

I am glad you are starting to feel better. Don't let anybody tell you its all in your head, we've all heard that and they are WRONG in saying that!

There are so many ignorant, arrogant doctors in this world, its pathetic. I've pretty much given up on the bunch of them, except my chiropractor and naturopathic doctor.

Link to comment
Share on other sites
BelievinMiracles Explorer
BelievinMiracles
  • Author
Posted
So, what was the explanation they gave you for the inflammation? Because something obviously caused it! And the likely culprit is gluten, of course.

I am glad you are starting to feel better. Don't let anybody tell you its all in your head, we've all heard that and they are WRONG in saying that!

There are so many ignorant, arrogant doctors in this world, its pathetic. I've pretty much given up on the bunch of them, except my chiropractor and naturopathic doctor.

They didn't give me any explanation! I don't get how they could've tested me for celiac if they didn't take a biopsy from my intestines. Unless I'm wrong, but they might've missed it, especially if it was the beginning part of the disease right? And my blood tests...I read somewhere that it takes about 2 weeks to read them. I don't know if that's right or wrong but they had mine done in 4/5 days and I think they took only one test. I requested them to send me the tests they took and the results. I'm pretty sure I'm not a celiac but I want to make sure I'm not one, because I don't want to hurt myself any more than I have if I want a cookie here and there, you know?

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,090
    • Most Online (within 30 mins)
      7,748
    Nicole K
    Newest Member
    Nicole K
    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

    • Scott Adams
      50 YO Male Recently Diagnosed with Celiac Disease

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Waiting for urgent referral.

      By cristiana · Posted

      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      Celiac Dietician

      By Denise I · Posted

      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
×
×
  • Create New...