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

Recently Diagnosed And Needing Advice

Zachm

By Zachm
in Coping with Celiac Disease

Recommended Posts

Zachm Contributor
Zachm
Posted

So about a month and a half, two months ago I was diagnosed by my MD with it from blood tests. Before this, the reason I went in was more of a change in my bowel habits. I used to go once a day in the morning and for five-six months Id go 5 times a day, or sometimes 3 days without going. Recently, even though I have been trying very hard to avoid anything with gluten and only eating gluten free I've had four seperate occassions, AFTER going gluten free where I wake up around 4am and am on the toilet with HORRIBLE SHARP CRAMPS for at least an hour. I am talking about I am a man who never whines about any pain and I seriously have almost cried. I literally get shakes from the pains. WHY is this happening when I am gluten free? I need some advice because its taking a psychological toll on me and I dont get to speak to a GI til October 5th because thats my appointment. Thanks. 

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

what are you eating?   how long have you been gluten free?

 

read the newbie 101 locked thread at the top of this section.  it's tricky to be completely gluten free (which is the ONLY way the inflammation in your body will ever subside) but it's manageable.  it just takes a little practice.  when i was diagnosed, i was like, no big deal, i'll just order off the gluten free menu.  i won't eat the cookies, etc.  but it's really the cross contamination that will keep you sick.  so, it's a little (ok, alot) more difficult to eat out safely.  and i don't trust very many people to feed me.  early on, my friend made me some grape leaves (stuffed with rice) and i quizzed her before i accepted some to try.  when i got the container home, i noticed there was a white sauce on them so i called her and said what's in the sauce.  she says, oh, it's a lemon sauce, so, lemon, salt, etc.  i asked about any flour, why, yes, there was flour in it.  but only a little <and only a little will make me sick!!  for two weeks!!)  so, lesson learned.  celiac is a systemic disease, which means it affects your whole body when you take a gluten hit.  i get a lovely migraine, joint pain, foggy head, fatigue, etc...

 

read the newbie thread.  you can search different things on this forum.  i would advise you to start a food journal and record your body's reactions to different foods.  many of us had to cut out dairy (i would try that if i were you) and different foods in the beginning until our intestines started to heal.  to eat 'clean' to begin with (avoid processed foods and stick with whole foods)  maybe try taking probiotics. <many of us have been 'sickly' and have had to take mega antibiotics which kills all the bacteria in your intestines, even the 'good' bacteria which aid digestion)   

 

welcome to the forum :)  i hope you feel better !

Zachm Contributor
Zachm
Posted
  • Author

Well, Ill be honest, yesterday I took some cheese off of a pizza that I really missed, but it probably caused it. I still eat dairy quite often because its a struggle to find things I like because sadly I am picky, but the weird thing is before I went gluten free I ate stuff LOADED with gluten, looking back, and I never had pains like this. Could it be because my system is getting a little cleared and then now its becoming a little sensitive and a small amount throws it off?

Zachm Contributor
Zachm
Posted
  • Author

Oh and thank you! I hope you are feeling well yourself (:! I'm just glad doctors sort of know whats going on. Cant tell you how long my Dr tried to tell me I just had IBS and it was my nerves in high school.

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. Do take the previous posters advice and read the newbie thread.  It should be very helpful. Being gluten free when you are celiac involves a lot more than just reading labels or ordering a steak and potato at a restaurant. How our food is prepared is very important as even a very small amount of cross contamination will have the effect you are experiencing. It does get easier in time. Hang in there and ask any questions you need to ask. I hope you are feeling much better soon.

notme Experienced
notme
Posted

Oh and thank you! I hope you are feeling well yourself (:! I'm just glad doctors sort of know whats going on. Cant tell you how long my Dr tried to tell me I just had IBS and it was my nerves in high school.

yup.  ibs is a symptom, not a diagnosis.  kind of a catch-all in the gi world (aka cop out) yeah, i heard the "oh, you're just high strung" well, you tend to be that way when you always have to know where the closest bathroom is LOLZ

 

there is also such a thing as gluten withdrawal, it feels a little like the flu, so take it easy on yourself for the first few weeks.  a little extra rest, drink lots of water, think detox.

 

good LORD pizza would send me to the e.r.  -  you better just quit that (yes, i would die for a slice of good NJ pizza, but, don't.  just, don't.)  know this:  if you have celiac and you fool with the gluten, you will end up with worse things like lymphoma or complications from malabsorbtion, just a plethora of lovely side effects...  get serious!  and, yes, you may have been lessening the inflammation in your gut by eating gluten-free and then POW pizzabomb!  

 

think of it in terms of putting gasoline in a diesel engine.....   just won't run.  gotta have diesel !   ;)

squirmingitch Veteran
squirmingitch
Posted

All of the above is excellent advice.

Also you can be wonky for anywhere from a couple months to 6 months or a year. Your body is going through a big upheaval process. Even though gluten was going to kill you - your body is rebelling at not having gluten. You can expect good days & bad days. You didn't get sick overnight and you won't heal overnight. If you took cheese off a gluten pizza then you got cross contaminated. Now you know not to EVER do that kind of thing again. That kind of lesson sort of makes a lasting impression on you doesn't it? Don't take a finger full of icing off a gluten cake or sauce off a plate of spaghetti  etc....

Also you might try avoiding soy -- many of us have problems with soy. After 6 months you can try soy & see what happens - you may be able to tolerate it then.

As to dairy, that was my greatest love!!!! DAIRY!!!!! YUMMMMMMMMMMMMMMMMM!!!!!!! You can try Lactaid milk & see if you do okay with that. Hard, hard, cheeses are more tolerated than softer ones. But really, you need to give your body at least a few months before trying any of that stuff.

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

Celiac.com Sponsor (A8-M):


Zachm Contributor
Zachm
Posted
  • Author

OH also, do you happen to know if its bad to take immodium when dealing with this? Because I do after a couple hours if it doesn't go away

squirmingitch Veteran
squirmingitch
Posted

Imodium is gluten free & fine for you to take. 

 

Drink lots of water, get lots of rest. 

Archived

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

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


  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      All of a sudden I can't get any gluten-free nuts. There are only 2 nuts available that I can find on the market that are gluten-free. One is Mauna loa brand macadamia nuts, the other is Wonderful pistachios. Other than that all types of nuts that are plain nuts, roasted or raw are no longer gluten-free and are processed and plants that also process wheat.  Has anyone found a source for Pecans, almonds peanuts, walnuts, Pine nuts, etc that is gluten-free?
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      @Xravith, How are you doing?   Two cookies are not enough.  For testing, you need to be eating a minimum of ten grams of gluten for two weeks minimum before testing for Celiac antibodies.  Ten grams of gluten is roughly five or six slices of gluten containing bread per day for two weeks minimum. Breads that contain lots of gluten typically have large bubbles formed by gases escaping during baking.  Gluten helps form those bubbles of trapped gases, like a balloon.  Artisan breads, and thick, chewy pizza crust are good examples.  Look at the size of the bubbles in cakes and cookies.  Small bubbles, so not lots of gluten in them.  You'd have to eat tons of cookies to get ten grams.   Antibodies are made in the small intestine. If you eat at least TEN grams of gluten for at least two weeks, then there will be sufficient antibodies to move into the bloodstream, which can be measured in antibody tests.   If you eat less than ten grams of gluten daily, you will get celiac symptoms, but not enough antibodies will get into the bloodstream to be measured, resulting in false negatives.  Anemia, diabetes, and thiamine deficiency can also affect testing, resulting in false negatives. Since you are having such difficulty consuming sufficient quantities of gluten, you should consider getting a genetic test done.  You do not have to eat gluten to have a genetic test done.  Celiac is inherited.  It's in your genes.  Genes don't change whether you eat gluten or not.  A genetic test looks for the most common known Celiac genes.  If you do not have the genes, your doctor can look for other health conditions that can be causing symptoms.  If you do have Celiac genes, you can assume that those genes are actively causing symptoms.  An endoscopy to check for the amount of intestinal damage caused by Celiac Disease is usually done.   You should also be checked for nutritional deficiencies.  Ask for an Erythrocyte Transketolace Activity test, which checks for Thiamine deficiency.  Thiamine, Vitamin B 1, is one of the eight essential B vitamins.  Thiamine can become low quickly because our bodies use so much of it everyday.  If we're not replenishing Thiamine daily from our diet or because of malabsorption, we can become seriously ill.  Same with the other seven B vitamins.   Doctors are not familiar with nutritional deficiency symptoms as can occur in Celiac disease.  Please get checked for nutritional deficiencies.  Ask for the Erythrocyte Transketolace Activity test soon. Please let us know how you are doing.  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • 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.