Maddiecl

Hello! I am going on my first vacation since the diagnosis and am feeling a tad overwhelmed.  We will be camping in CO, the closest city to us will be Grand Junction.  Does anyone know of any safe places to eat in that area? Or even just fun things to do.  Thanks!

You may want to count your calories for a week or so to make sure you are eating enough.  When I was diagnosed with Celiac I had to change my diet COMPLETELY.  I went from eating mainly carbs and dairy to eating mainly fruits and veggies and I lost about 15 pounds (that I didn't have to lose) in about 4 weeks.  My GI doc recommended that I count my calories and drink gluten-free/Dairy free protein shakes twice a day until I got the hang of the diet and found more things I could eat that were more calorie dense. Once I got my energy back and had the energy to cook and grocery shop more often eating an abundance of foods became much easier. I am now 6 months into the diet and I am keeping weight on just fine, and have gained about 5 pounds back. 

I'm so happy! after 6 months on the gluten-free diet, I have TONS of new hair coming in all over my head (I didn't even know I was losing so much hair).  I'm still not back to feeling 100% but it's so good to see improvements happening!

Hello Ravenwoodglass,

I know this is a verrry old thread but I recently got some biopsy results that also said I had Gastric Metaplasia.  Can you tell me what you are doing to monitor this condition, and what you know about it?  My doctor just told me not to worry about it, but the fact that it is considered a pre-cancerous condition is freaking me out. 

I really appreciate it.

Thanks!

Hello, I am so sorry to hear that your daughter is feeling unwell.  I'm new the Celiac diagnosis myself, I was diagnosed in November of 2017 at the age of 24.  I know I'm quite a bit older then your daughter but I can relate to many of her symptoms and the "rollercoaster" of a healing process she has had.  I too am not feeling as well as I hoped I would at 5.5 months gluten-free.  I also experience days and weeks of feeling fairly good and having fairly normal BM's and then go back to being sick for no apparent reason.   Last week I had a repeat Endoscopy and Colonoscopy to put my mind at ease since I had met my deductible.  Everything came back normal and my villi looked a lot better but not healed.  I was reassured that after all of the tests I have had there was nothing going on with my GI track other than lingering symptoms of the celiac disease and I needed to be patient with the healing process.  It is incredibly hard to be patient when the healing process is this slow and painful.  I just wanted to tell you this story so you know this process really can be long and miserable and maybe (hopefully) that is the only reason your daughter is still so unwell. The fact that she is now having SOME brown healthy looking BM's now is a good sign!

This same thing happened to me.  After I had been gluten-free for about a month and a half I began having dizzy spells and lightheadedness.  On top of this, I also developed the sensation of having pressure on my chest.  I am now 5 months gluten-free and this has gotten much better!

Ok, so I was diagnosed with celiac disease four months ago and have been gluten-free ever since. Some symptoms have improved but I still feel nauseous and just generally sick a lot of the time.  My GI doctor re-tested my antibody levels and they were in the normal range.  My doctor said that since my antibodies are in the normal range my symptoms must be from another issue such as IBS.  Has anyone else experienced lingering symptoms like this even when antibodies are in the normal range?  How long did it take for your nausea, "icky" feeling to go away after starting a strict gluten-free diet?  

Thanks!

So I have been gluten free for about 3.5 months now and I was finally starting to feel pretty good.  Last weekend I had a couple shots of Jim Beam Whiskey and I have been sick ever since.  I have read a lot of conflicting information on whether or not it is possible to have a reaction from distilled beverages.  Have any of you been "glutened" from whiskey? 

Thank you all for the replies! I really appreciate it!

Hello, it's me again!

So I have been gluten-free for 3 months after Celiac diagnosis.  I am 25 and I was sick about 3 years prior to diagnosis.  The recovery process has been extremely slow and has been full of many ups and downs.  I assume the damage to my small intestine was pretty bad because the Dr who did my Endoscopy told me he was already sure I had Celiac disease just from seeing my intestines before we had the biopsy results. 

Why is it that when I read a reputable book, or look on Merk Manuals, or other websites that should be very reliable it says it takes 2-3 weeks to heal from Celiac disease.  This can't possibly be true, is it?  Why do so many Doctors including my own, believe recovery is so quick and easy.   

I have noticed some improvements since I have been gluten-free but I am FAR from being back to my old self.  Also, the things that are improving are things I wasn't even blaming celiac disease for in the first place like cold sores and trouble sleeping and painful periods. However, nausea, fatigue, and occasional bloating are still quite prominent. Does this sound like a normal pattern of recovery? I have done everything I can think of to try to heal quickly.  I am taking probiotics and digestive enzymes,  I am in the middle of an elimination diet, I have made my kitchen gluten-free.   

I would love your opinion.  Do I just need to be patient with the healing process or should I look into other possible causes or even the dreaded refractory celiac?  If you had a long recovery story I would love to hear about it. 

Thanks!

When I woke up from my Endoscopy and was told I definitely had celiac disease the first thing I asked my doctor was do I need to get all new kitchen stuff? He assured me that I did not, and as long as my pots and pans and everything else was washed after being used to cook gluten I would have no problems. Well, I'm 10 weeks into my gluten-free diet and still feeling crappy as ever.  I have not been eating out unless the restaurant is 100% gluten-free (I'm lucky there are several near me).  I am very careful that everything I use to cook my food is thoroughly cleaned at home, but is this really enough?  Did you guys need to replace most kitchenware in order really avoid being cross contaminated?   I'm curious to get some opinions before I spend a bunch of money on new/separate stuff.  Thanks!

I have had a very similar experience to yours.  Previously to my celiac disease diagnosis, I had mild abdominal cramping and a little bit of occasional nausea and fatigue, but that was it.  I ended up getting tested for celiac because I also had mucose in my stool which I guess is a sign of inflammation. I have now been gluten free for 2 and a half months and things definitely seem to be getting worse before they get better.   I now have new symptoms similar to the ones you mentioned like lightheadedness, and one episode of passing out,  extreme nausea and fatigue hopefully this is all part of the healing process!

I have been gluten free since I was diagnosed 10 weeks ago.  I have noticed a slight improvement in some of my symptoms but other symptoms seem to be staying the same or maybe even getting worst.  I have also had the worst nausea almost every single time I eat for the past month.  Does this sound like a normal part of the healing process? I am getting so discouraged, I have been eating so carefully and feel like I am getting further and further away from my old self.  Any advice or encouragement would be much appreciated!

So I was diagnosed with Celiac Disease exactly a month ago today through blood work and biopsy. I have been on a strict gluten-free diet ever since, I have only eaten food I have cooked myself, and I am sure I have not had any sort of cross-contamination problems.  I have also been avoiding dairy and oats.  The vast majority of my diet is fruits, veggies, gluten-free whole grains, beans, legumes, and nuts.  

I have been a little discouraged because it seems like everywhere I read everyone says they started feeling at least a little better within a few weeks.  I am 1 month in and I don't really see any improvement, maybe more energy but that's about it.  I am still having a lot of GI symptoms like nausea, cramping, and gas pains, particularly at night time. I am wondering if it is normal to still have so many GI issues after being gluten-free for a month?  

How long did it take you for your GI symptoms to resolve?