How Long Does It Take To Start Feeling Better (And Other Questions)

[gh0st]

Hi guys. I was looking for an intro section but it isn't available as far as I can tell. 

 

I've been sick for the past year trying to figure out what is wrong with me. My primary told me there was nothing more he could do for me after him giving me the run around for 2-3 months. He took a few tests but then started giving me antidepressants, saying I was just depressed and anxious.

 

To shorten the story I took an endoscopy and everything came out negative and I was sent to an infectious disease doctor who tested for a variety of things and celiac came back strong positive. I went off gluten immediately and felt great within 3 days. 

 

My symptoms are need for immediate evacuation of bowels to painful bm to no pain. I don't really get D or C. I do however get mucus in my stool every so often. (maybe 1-2 times a week). It really hits me more in the energy, mood, and foggy head feeling. I also feel a burning in my bowels and feel like I have a constant fever. I almost every night have 37.1 to 37.4C temp. Very lowgrade fever. And you might say this isn't a fever but im always at night around 36.5 (when I wasnt sick).

 

Anyway the digestion specialist wanted me back on gluten so he could perform another endoscopy. So I asked him how much to eat and he said normally. So I had cookies and pies, and sandwiches/burgers. I felt like crap that whole week. 

 

Results came back positive for celiac and the biopsy was positive.

 

Now I am recovering but I find that it is taking much longer and feel as if at times I'm not progressing at all. I even started throwing up the first few days.

 

I guess my question is how do I find out my sensitivity? Is there a test? Also I've been eating mainly raw stuff except for peanut butter which seems like a good processed choice because it is really just a blend of peanuts and oil.

 

Is the mucus thing a normal thing for recovering celiacs? I also seem to have very thick spit that sinks in water then pops back up. Just very thick spit.

 

Sorry for all the questions but I've been really bummed last few weeks and really have been thinking my time here might be short. I know this is a crappy way to live, but I decided to just live my life, fight through it, and leave the rest up to the universe to sort out.

 

I will be traveling in a few days to europe to see my baby doll, because I feel like she helps me a lot through this. I will be flying on virgin and they have a gluten free meal. Should I consider this celiac safe?

 

Thanks for being an ear, and listening to my psychotic ramble

 

 

[GF Lover]

Hi Gh0st and welcome to the Forum.  We love psychotic rambles

 

First off, there is no range of sensitivity with Celiac however there may be a range of the severity of symptoms.  Celiac is an Autoimmune Disease so if you ingest gluten, you will have an autoimmune reaction causing a myriad of symptoms.  ANY amount of gluten will cause this reaction so you must be 100% gluten free.  The mucus in your stool is most likely from Malabsorption which is common in Celiac Disease.  As you begin to heal this will most likely improve.  Your body is damaged from the disease and will take a lot of time to recover.  Try to eat only whole foods for the first few months.  Some people also remove Dairy for awhile as it can be difficult to digest with damaged villi.  You may also want to get your Nutrition levels checked by blood test to see it you are deficient and need to supplement.  This is also common with Celiac.  Try not to eat out for a few months as the risk of cross contamination is great and you will need to learn the skills to do this successfully.  You should read the Newbie 101 thread to find out what changes you may need to make in your kitchen to be safe.  You should also check any medications or suppliments for gluten.  Check your shampoo if you get it in your mouth.   Recovery takes time.  Some symptoms may clear up relatively quickly, a couple weeks to months.  Others may take up to a year. 

 

I hope I have answered some of your questions.  Have a great trip. Your recovery will depend on your faithfulness to a 100% gluten free diet. 

 

Colleen

[nvsmom]

Welcome to the board.  

 

Ditto everything Colleen said: healing can take quite a while. Some symptoms improve immediately, others feel worse for a few weeks if they experience withdrawal, and others find recovery is not steady with symptoms that backslide sometime in the first year... And those gluten challenges can take quite a toll on people; it may take a few months to recover.  

 

If possible, bring your own food on the flight. Their gluten-free meal might be gluten-free but make sure there is no chance of contamination before eating it... basically, make sure it came as a sealed meal and you are the one to open it. I tend to bring my own food just to be safe; I'd hate to get sick while travelling.

 

Hope you feel well soon.

[Greebo115]

Ditto what the others have said - but another reason you must take back-up food for the flight: I ordered gluten free (it might have even been on a Virgin flight), and it got left behind, so they offered me a VEGETARIAN meal - like that was ANY good to me at ALL - arghhh! (pasta and veggies slathered in sauce, with a cake for dessert)

[gh0st]

Thanks guys I appreciate it.

 

I have one more question. I constantly feel like I have a fever even when I don't. But my temperature seems to be fluctuating a lot. Sometimes from 95.9 to 99.3. Is it possible I might have something else as well or am I being a hypochondriac, and need to wait this out?

[Gemini]

The gluten-free meals on Virgin are very safe.  I fly that airline a lot and have never, ever gotten sick and I am very sensitive.  They serve the food allergy people first so your food doesn't get mixed in with the gluten eaters.  The flight attendants seem to be very knowledgeable about Celiac also.  They seem to get it right every time with me so I trust them.

[BelleVie]

It definitely takes time, and it is worth being absolutely rigid about the diet in the beginning to make sure you are doing everything right. I'm now almost three months in to 100% gluten free, and it's only in the past couple of weeks that I've started feeling consistently okay. It takes time, but you'll get there. 

 

About your fever, have you been to the doctor to check for a regular infection or anything of that nature? Several times in the past, I've had a low grade infection that creeps up on me over time, and one day I realize that I feel awful and that I am feverish. Though I don't care to take them, sometimes a round of antibiotics really helps. I had an infection a few days ago, took some antibiotics, and have a lot more energy today than normal. 

 

Hope you feel better soon! 

[gh0st]

I haven't gone to the doctor to check for an infection but the fevers almost always start after i eat dinner (which is my biggest meal of the day), and always low grade. Sometimes within an hour I get drops from 99 to 97. It just seems like a huge drop, and I always get cold from the drop. As I'm writing this I have a 98.8F temperature and I feel like I'm burning up.

 

I'm heading out to europe (croatia) tomorrow and I'm wondering if I should see a doctor over there or will it be a waste of time.