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

Tested Today

Dreamer80

Recommended Posts

Dreamer80 Newbie
Dreamer80
Posted

Hi,

I'm a 31 year old female who has had chronic diarrhea on and off for about 8 years now (came on when I was pregnant with my second child). The past few years it has gotten progressively worse. I went to the dr. a few years ago and was told it was probably just IBS and to take Imodium. No tests or anything. So I have basically lived on the Imodium ever since. But a few months ago I started feeling just terrible. Still with the diarrhea almost daily, extreme tiredness, moody, nausea at times, brain fog, cramps, bloating, almost daily headaches. And the Imodium no longer works like it did. I have to take 3 now instead of 2 for it to do anything, and even when I take 3 it's hit or miss. I actually first read about Celiacs two weeks ago, it was on the newspage on my internet homepage. I never click on the links, but for some reason I did then...it said "Celiac disease on the rise." and it showed a picture of someone's stomach (I guess that's why I clicked it.) So when I read about it I was floored because I had so many of the symptoms! And I do have a family history of digestive troubles. My grandmother on my dad's side had some kind of colitis. My dad's sister had colon cancer. And my dad had severe diverticulitis a few years ago and almost died. As far as I know none were ever tested for celiac. My dad has always had a "sensitive stomach" like me and would be in the bathroom after almost every meal. I decided to try to gluten free diet and started it Friday of this past weekend. And maybe it was all in my head but that day I felt amazing! My stomach didn't make a sound all day. The next day however I did get the usual diarrhea and cramping, which discouraged me, so I stopped the diet and decided to just get the blood test. Which I did today. I was tested for anemia today but was fine. They also tested me for vitamin def. and thyroid problems. I was told my tests would be back Thursday. Does it sound like I have Celiacs? I am so worried people will think I'm nutty if my test comes back normal and I still try the diet. I am just so tired of feeling like this! :( I honestly hate leaving my house because I am so worried about having to find a bathroom in a hurry. Ugh! I want my life back!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It does sound like you are in the right place. Do wait on trying the diet until all testing is done. After testing is finished give the diet a good strict try for at least a couple of months. Things can be up and down at first so don't get discouraged if your not instantly feeling great. Read as much as you can here and ask any questions you need to.

Dreamer80 Newbie
Dreamer80
Posted
  • Author

Thank you for your reply ravenwoodglass. I am sorry my post turned into a rant, I was in tears yesterday when I wrote it. It's just been such a long, hard road. For years I've thought maybe it is some kind of food allergy, and I've tried cutting certain things out of my diet, but it never worked. There never seemed to be any rhyme nor reason to it. And until 2 weeks ago I had never even heard of a gluten intolerance. I am just so tired of being told to just "relax", that it's all in my head. I know there's more to it. Not to say I don't have some sort of IBS, I'm sure my fear of the troubles that often happen when I'm out only makes it worse. I know I do need to be more patient, when I start the diet again I will be. At the time I didn't know things like needing a seperate toaster (I toasted my gluten free bread), and all the little things. I'm sure I did just gluten myself.

I feel like I'm waiting to see if I've won the lottery. I know it sounds a little weird to wish to be positive for a disease, but it'll change my life. I'll finally have answers, and a way to help myself. I have 4 little boys, the youngest is 3 and the oldest is 10...I really, really need my energy back, LOL. And I do want to be positive on the test because I want to get my boys tested, since I know it's genetic. I want to be able to go to their doctor and say "I tested positive for Celiacs Disease, so I need you to test them." I know it's a hard diet/lifestle. I love bread, and cakes, and all of those things. But, I love my smile more. I'll happily give it all up if that's what it takes.

My parents were somewhat supportive at first, my mom even went shopping with me when I got all of my gluten free stuff. But that second day when I told them my stomach was hurting they right away just put it out of their heads, said it obviously wasn't that. And my mom keeps saying that it's "too expensive" for me to try a diet like that for 2 months anyway. (My husband and I have a limited budget.) So again, having the positive test would solve all of that too.

My husband is being very sweet about it though. Yesterday I told him that even if the test comes back negative, I could still have at the very least an allergy to gluten. I told him there was a test I could order online and they could tell me what I am allergic too, but that it was expensive. He said "I don't care how much anything costs, I just want you to get better." :)

I do have a question. Is it poossible to eat something one day and not be overly bothered by it, but eat it a different day and be miserable? That's happened before.

Thanks again for the response.

ravenwoodglass Mentor
ravenwoodglass
Posted

The diet doesn't have to be expensive. Go with whole unprocessed foods like fresh meat and chicken, rice, potatos, fresh or frozen single ingredient veggies and fruits, beans etc. It is also possible to have delayed reactions or to have the reactions 'build up' so something you eat today may not be reacted to until tommorrow. The gluten free processed foods can be expensive but we don't have to eat a lot of them. I only buy a loaf of bread a week at about $4 and an occasional package of cookies or a package of Kinnikinnick pizza shells at about $9 but there are four of them.

If you live near a Wegmans they label all their gluten-free store brand items which makes shopping easier for stuff like pasta sauces etc. There are companies that will label gluten clearly like Kraft and Unilever and ConAgra. If you don't see wheat, rye, barley or oats it isn't in there. Some companies do have a risk of CC, Frito Lay is one and I only eat their plain chips. Thai Kitchen makes some good rice noodles that are a bit cheaper than specialty gluten free pastas. I love the Angel Hair style.

A rice cooker can also make it easier for us as well as a crockpot for a family. If you like stews cornstarch or a potato cut up real small will thicken them nicely.

I hope things improve for you soon but it can take some time for us to heal completely. Oh and one more very important thing do not bake with wheat flour as it can hang in the air and CC you. If you have family members that have to baked goods buy them already prepared and make sure that things get cleaned up well before making any of your own food.

Dreamer80 Newbie
Dreamer80
Posted
  • Author

Thanks for the tips and information! :) I do have a rice cooker, I guess I need to get a crockpot too. I bought myself some of the gluten-free chocolate chip cookies last week, and they were yummy! I don't live near a Wegmans. Kroger had the most gluten free food around here (but even they didn't have very much.)

shadowicewolf Proficient
shadowicewolf
Posted

Honestly, i'd rather have a steak then eat processed foods most of the time.

It really isn't that much more expensive if you stick with whole foods.

Archived

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

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


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.