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Newly Diagnosed - Just A Few Questions
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7 posts in this topic

Sorry in advance if I am not posting properly. My thinking is a bit foggy and I was a bit too anxious to properly read the directions for the forum.

 

Anyway, here goes.

 

I have been having stomach issues, fatigue and bloating for a while. So a few weeks ago I had an endo and my doctor discovered celiac antibodies. I kind of figured this was going to be the case so I was a bit proactive and went gluten free right after my appointment. He called with the results a week later and confirmed it and told me to go gluten free from now on. I am now going into my third week.

 

Last night was pretty rough. I hate a lot of fatigue, nausea and numb limbs. My face tingled a bit. This has happened in the past. I go to the urgent care and they just shake their head and send me home with a lighter wallet. I've discussed this with my specialist but he hasn't stated anything concrete. I have an appointment on the 23rd - so hopefully that will be covered then.

 

Also, my hunger has been insatiable.

 

But the first few days of the gluten fast I actually felt better. Now it feels like I am relapsing a bit. I have been pretty careful to avoid cross contamination and I am checking labels like a mad man. Is this normal?

 

Thanks,

Jesse

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Yes,  people  go through  all kinds  of issues  while  the body  detoxes  itself....Plus  you  may  go through  pain,  sadness,  anger, denial, grieving & so  on.. It's  all normal &  it  will go  away....You will also learn  to  hear what  your body is  saying through this process...Down the  road  you may find  other things  that  cause you problems   that  in  your  wildness  dreams you never  realized...

I  surprised  your  doctor  did  not  want ypou to get  an endo  with at least  three  biospies.......

It  is  great  that you  are  a label  reader,  some  companies  are  known to change  ingredients  like  we  change underwear!!!!!

 

Try to  stick  to  a  very  clean  eating  pattern for the next  few  months ie:  stay  away  from  alot of processed  foods,  dining out,  &  fattening  snacks....this  will give  your  body  time to  make the  changes it needs too &  you  will heal  the intestinal tract  .....

You  will have  ups  & downs  &  possubly  mishaps  as well. Use  these  times  as  a  leraning  experience....

Also  if you continue  to feel not so good  try  removing  dairy  for  a few  months  too....

 

Be  sure  to  check  your   kitchen  for  items  that  are  scratched,  plastic   utensils, teflon,  cutting  boards,colander, toaster, blender  &  such  for  any  CC.... 

Have  pets  check  the pet  food  for  wheat  esp.  if  you have  small children... I know that may sound  strange  but  small kids crawl on the floor  the dog  licks  their  faces & body  , you pick the kids up  &  hug &  kiss  them ,  gluten  attack!!!!

 

blessings

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I agree with everything in the previous reply.  The only thing I would suggest additionally is that you choose a menu which only includes a few options for breakfast, lunch and dinner, stock those in your home, and eat them for the next week, or two.  I found that in the beginning, having to think about food and continually check into possible contamination issues created additional unhappiness in me.  Also, in regards to you home, making sure you have a dedicated cutting board, a pot/pan and utensils (no wooden spoons) and clean condiments will also ensure that your hard earned efforts of staying gluten free pay off.

 

Good luck!

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Thanks, everyone. It's greatly appreciated it. This has been rough. I think the worst part is the uncertainty. It's a new feeling which I have never experienced. The internet definitely helps and hurts. I've been reading the good stories and the bad and not sure where I will land.

 

I'm going to take the advice about the pots and pans and utensils and will also browse around for a simple menu. 

 

I read an interesting quote last night from a guy who said he thought his life was over when he got his diagnosis but that it was really just the first day of a wonderful experience. So I'm trying to stay optimistic.

 

Thanks to all of you.

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No, life is definitely not over with a celiac diagnosis.  It is just the first day of a new, better life :D  (and I'm not just being Pollyanna).

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No, life is definitely not over with a celiac diagnosis.  It is just the first day of a new, better life :D  (and I'm not just being Pollyanna).

 

I see that you have a lot of intolerance's in your profile. What kind of meals do you eat?

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I see that you have a lot of intolerance's in your profile. What kind of meals do you eat?

 

Looking at my food it doesn't appear any different to anyone else's :D -- just no one else can prepare it!!!  Actually, there are some places I can go to eat out :)  but I always take my Lectin Lock with me because, like GottaSki, lectins are my major problem -- worse than the gluten thingy :lol:

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  • Posts

    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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