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

Whats Wrong W/ Me....seriously?

linz7997

Recommended Posts

linz7997 Explorer
linz7997
Posted

Hi!!

Thanks for reading this...ok...here goes.

I have always had what my family refers to as "stomach issues" since I can remember. I know that when i eat some foods (its not even a real pattern of food) I immediately have to run to the bathroom. And if by chance that day i dont have to run to the bathroom...well, thats because i am on my cycle of not going to the bathroom for 4 days at a time. I have noticed that sometimes dairy effects me...but not always...it seems to really be bothersome if i eat/drink it on an empty stomach...does that even make sense?? I alternate between horrible cramping, constipation, bloating, diarrhea pretty much every day of my life. Eating has become something that causes stress and anxiety, which of course only makes it worse. I have no energy, I literally could take a 4 hr nap at any given time. And then there are the headaches. I have gotten CAT scans and MRIs and they have found no cause for the headaches...but they are very sharp pains that last for a short time but I get many times during the day. Im pretty sure I am anemic since the slightest touch bruises me. I went to the doctor thinking I had IBS and they gave me some meds to help w/ my stomach and they did nothing accept to severly dry out my mouth. Im just getting so sick of being sick....all the time. Im sick of having to carefully plan out where I am going to be and if there will be a bathroom near by!! Its sooooo embarrassing!!! Not to mention the fact that my moodiness and lethargy is taking a toll on nearly every aspect of my life. Anyway...today is the first day that I am attempting to go gluten-free...though its hard because I think everything in my pantry is full of it !!!! :)

So there you have it...what d'ya think?? Do you think this gluten thing is my problem?? I kinda hope it is because then at least I can start to get better, since nothing else has worked!!!

Any help or anything would be greatly appriciated!!

Lindsey

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

Celiac.com Sponsor (A8-M):


queenofhearts Explorer
queenofhearts
Posted

You could very well be Celiac from the symptoms you describe.

Congratulations on figuring it out for yourself! For some reason doctors just don't seem very clued-in about this disease. You might want to be tested now, though, before going gluten-free, because it you have been without gluten for long, the tests aren't accurate.

Believe me, this forum is the most fabulous resource you will ever find on celiac disease, as you have probably already discovered-- you'll find lots of info & moral support here. Welcome!

Leah

AndreaB Contributor
AndreaB
Posted

Yes, definately cut out all gluten and throw out what is in your pantry that could tempt you to leave the diet. If you haven't checked the main page of celiac.com do so here for the page of safe and forbidden foods. Another thing that you will want to try to do is eliminate dairy also. Go totally off of it for two months then reintroduce it to see if you have any problems. It may be that you can tolerate small amounts. I am mildly dairy allergic but not intolerant. The only dairy product I have is butter. If you find you can handle small amounts I would suggest evaluating which dairy item is most important to you.

Welcome and be sure to look around this forum. You'll find all sorts of informative and loving people here. :P There is a learning curve to this diet so don't be to hard on yourself if you have accidental glutens. Many people have also found it beneficial to switch out health care products that have wheat in them. Another thing is the toaster, if you plan on eating rice bread you will definately need to get a new toaster. There are many things but take them step by step as you can afford to. You also would need to get rid of scratched teflon pans, plastic ware etc as you have the funds to replace them.

linz7997 Explorer
linz7997
Posted
  • Author

so can i just go to a general family doctor to get tested?? is it a blood test???

AndreaB Contributor
AndreaB
Posted

You just need to ask for the celiac panel. It includes 5 tests from what I've read.

jerseyangel Proficient
jerseyangel
Posted

Hi Lindsey and welcome to the board :)

Your symptoms could point toward gluten intolerance. There are about 200 symptoms associated with Celiac Disease!

What I would suggest you do is make an appt with your doctor--ask for the complete Celiac Blood Panel--a regular set of blood tests (CBC, Metabolic Panel) will not tell you anything about Celiac. It is important for you to be consuming gluten prior to the test. This is important: if you plan to be tested do not stop eating gluten! I know it's tempting to test yourself, but to get an accurate result, you have to be on a regular, gluten containing diet right up until the test. Your family doctor can order the test for you, or you could choose to see a gastroentrologist.

If a firm diagnosis is not important to you, you could go gluten-free yourself--that's a personal decision. Just keep in mind that if you go off gluten, it will skew the result of any blood test or biopsy you have done.

Good luck! :)

AndreaB Contributor
AndreaB
Posted

Another option if you want to go gluten free now is enterolab, but it is pricey. Click Open Original Shared Link for more info.

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

Celiac.com Sponsor (A8-M):


dionnek Enthusiast
dionnek
Posted

I would recommend a gastroenterologist - I went through 9 doctors before finally going to a GI who figured it out right away! Your symptoms do sound familiar though :) And if you decide to just try the diet (or if you do get a positive diagnosis for celiac), don't give up after a few weeks. I've been gluten-free (I think) for over 2 months now and still do not feel much better. It is a long process and a lifetime change, so don't expect results right away. It is frustrating I know to keep with it when you don't see improvement, but I look at it like everyday I find something else that I need to change, and eventually I will be totally gluten-free and my intestines will be healed :)

mmaccartney Explorer
mmaccartney
Posted
Another option if you want to go gluten free now is enterolab, but it is pricey. Click Open Original Shared Link for more info.

I have to disagree, I did not find Enterolab to be pricey. Sure it costs $360 for the celiac panel "complete" however I paid more for my 2 endoscopies and colonoscopy let alone all the other tests I was given and had to pay 20% of......I wish I would have gone to Enterolab in the first place like I was considering....I think I paid more in the long run with my Dr and his tests....

jerseyangel Proficient
jerseyangel
Posted
I have to disagree, I did not find Enterolab to be pricey. Sure it costs $360 for the celiac panel "complete" however I paid more for my 2 endoscopies and colonoscopy let alone all the other tests I was given and had to pay 20% of......I wish I would have gone to Enterolab in the first place like I was considering....I think I paid more in the long run with my Dr and his tests....

I did too! The 20 per cent that we had to pay (endo and colo, pathology and blood work) came to more than if I had just done the Enterolab. The problem is that I didn't know about Celiac, or any of this until after I was diagnosed! If I had it to do over, knowing what I do now, I would have gone for the Enterolab testing--in addition to it being cheaper, it would have given me more information. The Celiac Blood Panel, if covered by insurance is a good place to start, though--Lindsey had said that she was considering going off gluten, so I took that as she was still eating it.

AndreaB Contributor
AndreaB
Posted

Patti and Michael,

I have found a lot of complaints about the price of enterolab which is why I stated that. I am relieved to have them available and didn't even go through doctors so I wan't aware of what insurance covered or didn't. I have read on the slide presentation that enterolab has that was posted by someone else on some enterolab threads that they will start offering testing for allergies although I don't know when. I had all the tests done that they offer and was pleased with the quality of customer service as well. :)

jerseyangel Proficient
jerseyangel
Posted

Andrea--Probably because some insurance plans are much better than others! The one we had up until last year would have covered all of my testing--I only would have been responsible for the office visits. I guess my opinion would have been different in that case! Leave it to me to get so ill and need this kind of testing after we had to go onto this other plan (through my husband's company) Hindsight is always 20/20 :D

Sharon1422 Newbie
Sharon1422
Posted

I understand exactly how you feel. I am new here. I'm actually going for my biopsy on Thursday. I've already had the blood test done and have for sure test positive.

I have had eptopic pregnancy. Several ultra sounds. They decided that it was IBS so I started taking that medication which helped for several months.....I thought.....but then they didnt work at all, so......I go online and get some cleansing pills....that worked for a little bit.... Then I decided that something else is wrong so I just searched out another doctor cause the first one just had no personality and I had no confidence in him.

He also did a Colenoscopy and found out I also have adhesions from the eptopic pregnancy.

I was getting bloated on the smallest meals.....like I had a twelve course meal and feeling like I couldnt breath. Its been a long haul to find a doctor that actually new what test to take.

I am three weeks into my gluten free diet and already I am feeling better.

I know how you feel, dont give up you will find a doctor that will help.

Archived

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

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


  • Member Statistics

    • Total Members
      130,351
    • Most Online (within 30 mins)
      7,748
    Fly1962
    Newest Member
    Fly1962
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Confused About Results

      By knitty kitty · Posted

      @Ginger38, Diabetes and Celiac often go hand in hand.  Having more than one autoimmune disease is common with Celiac.  I'd err on the side of caution and go gluten free.   I did not want to go on insulin, either.  I got my diabetes under control by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  My diet now does include carbs.   We're supporting you through this difficult time.  
    • knitty kitty
      This Roller Coaster Ride Needs to Stop

      By knitty kitty · Posted

      @Ginger38,  I've been there with horrible symptoms and diarrhea accidents and diabetes and the insulin conundrum!  My doctors were just as frustrating!   I had nutritional deficiencies.  I know your doctors refuse to test for this.  So did mine, saying "I can't make money prescribing vitamins."  Some members say a naturopathic doctor is more open to testing for deficiencies.  Remember not to start supplementing until after testing is done.  Otherwise the supplements will raise your blood levels falsely.   I had studied Nutrition at university, so I decided to supplement essential vitamins and minerals.  A B Complex, extra Thiamine (Benfotiamine) for the diabetes, magnesium and Vitamin D are the supplements I started with.   The B vitamins are water soluble so any excess is excreted easily.  Thiamine even in high doses is safe and nontoxic.  Diabetics lose more thiamine in urine because of weird kidney stuff.   I wanted to get my blood glucose levels under control because gluten free foods made my level spike for long periods, too.  I absolutely did not want to go on insulin.  Once you do, the pancreas stops making it.  Very scary.  Best to help the pancreas function with thiamine in the form Benfotiamine. I began the low histamine version of the Autoimmune Protocol Diet (developed by Dr. Sarah Ballantyne, A Celiac herself).  It's a low carb, very strict diet at first, then expanded.  I considered it similar to feeding a sick baby.  You don't give hard to digest foods to a baby.  You give easily digestible foods.  This allows time for the gastrointestinal tract to calm down and heal.  Symptoms started to calm down quickly.  With the vitamins, I started feeling much better.  My blood glucose levels stabilized.  I did not go on insulin.  I do not take anti-glycemic pharmaceutical drugs like Metformin.  Just diet.  You're making the right decision to live as a Celiac.  Your body is telling you clearly.  You can get through this.  You're strong and you're fighting for yourself and your baby.  Good job!  You have the Tribe behind you!
    • maryannlove
      nuts.com -- no longer Celiac safe?

      By maryannlove · Posted

      Though trying to diligently eat gluten free, recent bloodwork was bad so searching for culprits.  Eat lot of (preferably mixed) nuts.  Most allergen labels say may be processed on equpment that also processes wheat, etc.  Finally found ONE kind (unsalted mixed) at BJ's.  Wessley (their store brand) that did not contain that warning.  Says in large letters "A GLUTEN FREE FOOD."  Well, all nuts are a gluten free FOOD!  Have been eating and now wonder if this is intentionally decieving.  So stopped eating until find culprit.  Nuts are so good for protein and fiber (especially if trying to not eat meat).  'Tis so frustrating.  Thanks to above, I'll look into Tierra Farms.   
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Fascinating! This was very helpful, thanks for sharing
    • maryannlove
      Yasso frozen yogurt bars - be careful

      By maryannlove · Posted

      Despite being very diligent about eating gluten free, my recent bloodwork was bad.  So been on a mission to find the culprit(s).  During Covid my daughter found "certified gluten free" Yasso mint chocolate chip yogurt bars at Costco.  I was elated and have been eating them since.  When delving into possible culprits I discovered that the boxes with 12 bars at both Costco and BJ's no longer say "certified gluten free."  But the boxes with 4 bars at groceries and Target still say "certified gluten free."  Contacted the manufacturer and was told to go by what the box says.  So guess different machinery is used.  Was also told they were in the process of changing boxes.  Will be interesting to see what that brings.  
×
×
  • Create New...