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

De-lurking With A Couple ?'s


Morrisun

Recommended Posts

Morrisun Newbie

I guess I should give a little background. Was diagnosed with celiac disease May '04 by bloodwork. I've had "stomach problems" my entire life, they've been getting worse the last 10-11 years. Looking back now I've realized that there were clues to my celiac disease waaay back when I was a very young child as my baby teeth came in with no enamel on them at all. :o

Anyway, after my diagnosis I figured that if I didn't go gluten-free that I would just continue to have the usual stomach cramps, "D", etc. We were in the middle of moving from one state to another, my DH was retiring from the military, it was an extremely stressful period of time. I'm not trying to make excuses per say, but I honestly did not realize how seriously I needed to take things and I really regret it now. Since my diagnosis last year I have also been diagnosed with Grave's Disease (Jan '05) and have just recently started treatment for that as it took over 2 months to get in to see an endocrinologist. :(

In the last couple of months I've done extensive reading and it hit me that I really needed to go gluten-free now, can't put it off, etc. And to be quite honest I'm sooo tired of feeling horrible. I know this makes me sound like an idiot but I didn't understand the severity of the issue, I didn't realize that by not going gluten-free it was putting me at risk for a whole host of other issues, cancer etc.

I have now been 100% gluten-free for 3 weeks. I have gotten a new toaster, new pots & pans and I've gotten dual PB, Jelly, Butter, etc so as to avoid CC with my DH who is not a Celiac.

The first week, week and a half of being gluten-free I felt better almost immediately. I had more energy, my stomach wasn't constantly "moving", the "D" had decreased greatly. It was great! Now however for the past week or so I've felt much worse and I can't figure it out. I read labels obsessively, I don't eat anything that I'm not sure about, I'm almost positive that I'm not getting any cross contamination.

I have been keeping a food diary for the last two days (so far) and I'm beginning to think that it might be a problem with Dairy, so today I have avoided all dairy. I'm just wondering how long did it take for most people's symptoms to improve greatly? Was there a big difference right away or was it a gradual improvement over time?

Sorry for the novel....I'll appreciate all input!! :)

Jennifer

Diagnosed Celiac May '04

Diagnosed Grave's Disease Jan '05


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



Celiac.com Sponsor (A8-M):



ianm Apprentice

Most will get better over time. It seems that it takes on average 3 months to start feeling better and a good year to be healthy. It took a lifetime for your body to get damaged so it won't heal over night. This lifestyle is not as hard as it first appears. It takes time to learn new habits and break the old ones. Once you get the hang of it you will feel so much better.

Welcome.

KaitiUSA Enthusiast

Yea the problems will go away but it takes time. Mine got alot better after 3 months then i was back to normal a few months after that. Everyone is different with symptoms and healing. Some people have it go away quicker then others. It will be much easier when you get the hang of it...you will find this site very helpful...alot of people on here know more about celiac then 95% of doctors you will find.

I also have graves disease

tarnalberry Community Regular

I want to at least say that it doesn't sound like you were an idiot for not knowing how important it was for you to go gluten-free; you were ignorant of the dangers and you've fixed that by finding out. And let's not forget to say shame on your doctors for not informing you!

mela14 Enthusiast

Dairy could definately be a problem as it is with most celiacs. It's been about 5 months for me and I am still trying to fine tune my diet.

Give it time and make sure you scrutinize everything. gluten-free can ony help you to feel better.

Hang in there!

stef-the-kicking-cuty Enthusiast

Welcome to this message board!

Tiffany, I wouldn't necessarily say, she was ignorant of the dangers. She just reacted like everybody else, who we tell: "Oh, I have celiac disease, I can't eat this" and they look at you, as if you're from mars. Because people can't know. That's because this is so rare, the awareness needs to raise and the doctors should be more informed. I'd say, it's not her fault. How could she know???

But know, you're doing a great job I guess. Did you also check your toothpaste, if it's glutenfree? Your soaps, shampoos, cremes, makeup, bodylotions??? And a lot of celiacs have problems with dairy at first. This is, because dairy is digested on top of the villi. But when they are gone, this isn't possible anymore. So when you're better, you could try dairy again. You might be able to digest it again.

Good luck and if you have a question just ask.

Morrisun Newbie

Thanks guys! I made an appt. with my Dr. for next week. I want to see if he'll do some additional blood work, check my Iron levels and things like that. I have checked my makeup, toothpaste, etc. Now that I've gotten the new pots and pans I'm pretty sure that my chance of contamination is pretty low. When you've had stomach problems for so long it's so hard to tell if you just sick, or if it's the celiac disease or whatever..ugh!! LOL

Jennifer


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



Celiac.com Sponsor (A8-M):



stef-the-kicking-cuty Enthusiast
When you've had stomach problems for so long it's so hard to tell if you just sick, or if it's the celiac disease or whatever..ugh!! LOL

This is so right! I wish you good luck and keep us posted!

tarnalberry Community Regular

I just meant ignorant in the "unaware of" sense of the word, not any of the negative connotations that are sometimes used with that word. :-) Ignorance needn't imply fault! :-)

hsd1203 Newbie

For me, the first week was wonderful, and then the next 6 months were kind of up and down, in part regardless of what I was eating (I even moved home and had my gluten-free mom cooking for me). I also had to cut out dairy and soy completely for 6 months, and limit fats and acidy foods as they all bothered me.

It gets better but be patient and read every label every time you eat something :)

Hope you're feeling better soon

H

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748

    Stephanie94
    Newest Member
    Stephanie94
    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

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • 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.