Jill0711

Prior to diagnosis, I had this exact symptom...along with many others. It would feel like someone was stabbing me in between my ribcage. The only thing that would even provide some relief was a heating pad and as much pressure I could manage on the exact spot. I did end up in the ER once. The GI cocktail did nothing for me. They called it gastritis. Within three days of going gluten-free, the pain was gone.

I was starving for about a month after going gluten-free. I think your body has essentially been starving for so long that when that is no longer the case, it just wants you to eat and eat. It does settle down after being gluten-free for awhile.

I'm still eating skittles as a food group I think it is a normal thing for our bodies to crave the things it is used to and needs. Personally, I'm hoping that once the B12 kicks in I will no longer eat them so often. I know that my body wants them for energy and sugar is always a quick energy thing...of course, the crash comes later.

First of all, you will not get better until you eliminate gluten completely. I found that when I went back on gluten for testing (per doctors orders) that my body got mad at me and went a little crazy and I ended up in the ER twice before I decided that I didn't care about the testing anymore. Second, even when you eliminate gluten completely, it takes the body some time to heal. As that is happening, you may go through gluten withdrawal, craving fats (in my case), and even having some really rough days. You definitely don't want to add dehydrated to that mix so make sure you are at least drinking enough fluids. After I eliminated gluten completely, within a few days, my appetite came back and I was starving Also, at the very least, you need to be taking a good multivitamin and probably add in some B12 and folate. When your body is not absorbing nutrients from food, these levels are low. My initial bloodwork before going gluten free, my levels were normal. Two months later, several were low so it takes time for the bloodwork to reflect what is going on in your body. If results are low normal, it doesn't take much to push them off the low end, especially if you aren't eating anything.

Thank you for your input. The only meds I take are synthroid and birth control bills. I know that I can't take vitamins within 2 hours of the synthroid, but the synthroid shouldn't effect the vitamin levels.

What is the difference between Methylcobalamin and the B12 that starts with a C? I didn't know which to get in the store. In your opinion, are there any brands that are better than others?

How soon should I expect to see a difference in my energy level?

I recently received the results from some bloodwork. I had the bloodwork taken because I have been exhausted and have had some peripheral neuropathy. I need some help interpreting the results as the doctor was less than helpful.

Vitamin B12 195 (221-700)

Transferrin Saturation 19 (20-55)

Zinc 45 (55-150)

There were also a few borderline things from the metabolic panel:

Protein, Total 7.0 (6.0-8.4)

Albumin 4.0 (3.5-5.0)

Calcium, Total 8.5 (8.5-10.5)

The only advice the doctor gave me was to take iron, B12, and zinc. He didn't even tell me the amounts or how long to take it or anything. Can any of you shed some light on what kind of supplementation I should be doing and what dosages. I know that you aren't doctors, but maybe your doctor was more helpful than mine

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

I understand your frustration and everyone has that moment where they freak out at never eating gluten again. I definitely went through that. If you can't wrap your mind around the all or nothing thing, then create a plan where you eliminate more and more until it is gone. Ideally you want to stop consuming it immediately, but it is better to take a month to get there than to give up on it entirely. Corn tortillas are usually ok; you do have to be careful with what you put in them (seasonings in particular). I have found that for us, we simply just eat out less. I didn't plan it, but it has just happened. Olive Garden has a gluten-free menu if you are seeking Italian and have one near you. PF Changs is also really wonderful. The biggest thing is for you not to be starving when you go. Always grab a piece of fruit or something else before you go. That bread will be much less tempting if you aren't starving. I just try to picture all gluten foods with a picture of poison on it and I remind myself that it hurts my body when I consume it. Those two things help keep me from cheating...and paying for it dearly. I always have food with me in case I get stuck somewhere or am running late. I always have a gluten-free stash of some kind on me at all times.

It must be very shocking to hear that diagnosis. Make sure that you are not making your decision in a moment of panic rather than really thinking it through. First, there are people who simply ignore the diagnosis and go on with their lives; however, know that your body is still being damaged in some way if you continue to consume gluten. You may not see the signs for months or years or even decades, but the damage will be accumulating. Second, there are people on here who have no symptoms at all and still avoid it. You have symptoms even if you are not connecting the dots. Fibro and thyroid disease can be brought on by consuming gluten. Obviously, you have to have the genetic component, but your body is telling you that it doesn't like it. Third, there are so many gluten-free products available these days that it is very manageable. You would be surprised at the restaurants that have a gluten-free menu. Bread is a weakness of mine so when I know that I will be going out to eat, I usually pack my own. Most restaurants are very happy to heat it up for me in a clean pan in the oven.

Ultimately, it is your decision, but just think it through. I encourage you to give the gluten-free diet a chance for a few months before deciding. Just pretend it is a regular diet. You may be surprised at the symptoms that are related and the ones you didn't even realize you had that will go away or improve. I will tell you from personal experience that your thyroid levels will improve on a gluten-free diet and become much more stable.

We are here to help by answering questions and giving you encouragement if you decide to try the diet. As far as your boyfriend goes, he will learn how to handle the difficult ordering process in restaurants. I find it helpful to call ahead of time during non-peak hours to explain my needs. That way I don't have to take the time in front of my friends to go through it all. Being vegetarian, salads are usually ok without croutons (or bring your own). Just watch out for the salad dressings as some of them contain gluten. I know that you feel like you can't do this. Trust me--we all feel the same way at diagnosis. You can do this and it becomes easier to everyday. You learn what you can eat, you find restaurants that you go to all the time where you know what is safe, and you meet some wonderful people who help you along the way to not only cope, but to thrive gluten-free. Is it easy? Not always. Do we sometimes get sad and mad? Definitely. Do all of us feel better without gluten? Absolutely. You can do it.

You also need to remember that damage in the small intestine can be splotchy so, even if multiple biopsies are taken, it can be missed. I say that you need to base it on how you feel because testing is still so unreliable. I know that it is frustrating, but trust your instincts.

I can tell you from recent experience, it does get better. For me it took about six weeks for things to calm down. There is definitely some withdrawal symptoms which sometimes feel worse than just eating gluten. If you stick it out, it will go away. Hang in there, take each day as it comes. Your body has a lot of healing to do.

In some ways, you can have issues from the diet alone and it is usually from lack of fiber. A lot of the gluten-filled products are enriched while the gluten-free versions are not. The other consideration is dairy. I was still having D after going gluten-free and I tracked it down to a dairy intolerance. Having a milk intolerance is actually very common for the newly diagnosed because the damage in the small intestine also hinders the body's ability to break down milk. I would try to eliminate dairy for a week and see if it improves. Some people are able to add milk back into the diet after some healing takes place; others cannot. If it is not dairy, you may need to look for some alternate source of fiber. You could also look for other food intolerances like corn, soy, etc. The best thing to do as someone mentioned was to start with a whole foods diet and then add things in slowly to see what you can tolerate. Keeping a food journal is a pain, but it really helps to notice a pattern.

Thanks for all of the advice and sharing my misery It is nice to know that I am not the only one dealing with all of this. Starting Monday (because I have to grocery shop tomorrow first ), I am commited to a minimum of 2 weeks on a whole foods diet. Part of my energy issue is that I am craving sweets because my body is still malabsorbing fats. I think all the sugar I have consumed is tanking my energy levels. I have also purchased a new gluten-free shampoo, conditioner, body wash, face cream, and makeup. This better work I figure I can either spend the money on new products or buy stock in benadryl A whole foods diet can only help with the healing so I am going to try. I will probably be back here whining by tuesday from sugar withdrawal

I'm only a month and a half into this journey. I just wanted you to know that I felt exactly like you are describing when I eliminated gluten. It didn't help that because I was malabsorbing fat that my body craved it...and not the good kind. I will second the Snickers. They did help me get through that time. I will tell you that it does get better. I'm just now starting to feel like my appetite is leveling on and the cravings are lessening. Now if only I can eliminate sugar I'm starting a whole foods only eating plan on Monday to try to see what other intolerances I have. I expect to go through the withdrawals all over again. It completely stinks, but it is worth it. Hang in there. Take it one day at a time and don't beat yourself up. This is a learning process and your body goes crazy trying to process all the changes and begin to heal.

Another option would be to find out the name of the person or place catering it and speak with them directly. You can ask how things are prepared ahead of time. This way your friend doesn't have to worry about handling it. I have a friend with celiac disease and the one time we went to a wedding together, the caterer even made her a special plate and brought it right out of the kitchen covered. I would still bring food as a backup, but I do that on a daily basis I'm paranoid of getting hungry and cheating...and regretting it.

I'm sorry that you are feeling this way. It is how I felt prior to my diagnosis and I did stop eating almost entirely (which is not a good thing).

I actually had a couple of followup questions about digestion in general. I would think that proteins and fibrous fruit would be harder to digest than carbs, but I'm certainly not a doctor. It just makes me think that I have been going about this the wrong way. If you had to pick 5-10 foods to eat at the start of the gluten-free journey to promote healing, what would you pick as the best things to start with? I think I'm ready to start a whole foods only trial, but I'm not sure what foods would be the best.

It's the patience that is the hard part I had to take Benadryl again last night because the itching is ridiculous. I'm not sure if the Benadryl helps because it stops the itching or because it knocks me out

It is weird to develop an allergy when I've never had any, but I've heard that can happen after diagnosis because the body is on hyperalert. I haven't cut out dairy yet either. I know I need to because I'm still having some gas, but I haven't been able to make myself give it up I know that I need to get over it, but it eliminates so many foods. Ok, I'll stop whining and just suck it up. It is so hard to know if something is related to celiac or something separate since celiac is so systemic. I've got a lot to learn. Thanks for the advice, you are all very helpful.

Thanks! It is nice to know that I am not alone Mine isn't DH, but I have the tiny bumps that itch.

Rain- sorry that you are still dealing with this 10 months later. I can't even imagine.

Sometimes I wonder if it is a problem with my lotions and shampoos. I must admit that I haven't even looked at them beyond chapstick because the food alone was so overwhelming. I think that going through my shampoo and stuff will be the next step. Maybe my body is just reacting topically to gluten even though I'm not ingesting it. Who knows, but I'm willing to try it to see if it helps. Other than that I guess I will just have to keep the Benadryl handy

Did any of you develop itching after going gluten free? I have been gluten-free for a month. I've had itching since the end of the first week. The itching is everywhere, but no rash. It varies in intensity from being an annoyance to the point where I take benadryl just to sleep. The only other time I had itching was when my thyroid was extremely overreactive. No signs of that being the case. I also had my thyroid nukes so I doubt it is related to that. Any thoughts? It is driving me crazy.

I am recently diagnosed and I have been gluten-free for about a month. I'm feeling remarkably better with one exception...my stool still shows evidence of malabsorption and I am still having intermittant D. According to the biopsy, my results showed early Celiac disease. I took that to mean that it wasn't very far advanced (in spite of the horrible symptoms ). At what point do I consider removing dairy or something else from my diet? I know that it takes time for the intestine to heal and maybe I am just jumping the gun. It is hard not being impatient I've been dairy light, but I haven't eliminated it entirely. How do you differentiate intolerances from the normal healing process?

I just wanted to add my two cents I have been recently diagnosed via biopsy. My bloodwork was negative, but the biopsy was positive. I'm living proof that you can have negative bloodwork, but still have Celiac Disease. There is a percentage of people who will always have negative bloodwork even with active Celiac. Like others have said, if you are feeling better then go with that regardless of the testing.

I have to chime in and say that my doctors were actually pretty fast in coming to a diagnosis. I was sick for six months prior to diagnosis. My primary care doctor did a whole slew of bloodwork, yet neglected to throw in a Celiac panel. I think that part of the issue is that most doctors think of Celiac disease as having D as the main symptom; however, the diarrhea doesn't start until a lot of damage is done to the small intestine. I consider myself lucky that I see an endocrinologist who personally has Celiac disease. We were discussing my symptoms and the first thing he says to me is "Have you been tested for Celiac disease"? So, I guess I can say that not all doctors are clueless Ironically, my blood work was negative. I actually had the EDG done to look for an alternate diagnosis. The gastro doctor said that he might as well biopsy the small intestine while he was in there even though my blood results were negative. I'm very fortunate that he did because the results were positive. Having a diagnosis is good for me because I can honestly admit that I may not have stuck with the diet without it. I feel better already and I can say that even CC immediately brings back all the symptoms.

Wow! Eight weeks?!? That is a really long time to wait on results. I thought 1 week to wait on biopsies a long time. I hope that the time passes quickly for you and you get the results you are seeking. In the whole scheme of things, just remember that you are in charge of your own body and your own health. Don't ever apologize for doing what you need to do to take care of yourself even without a positive test. For the record, my test was negative, but my biopsy was positive. It is possible to have a negative test and even a negative EDG and still have Celiac.

There is definitely a learning curve and breaking old habits. My pain is centered right between my rib cage, right near the bra line. It generally feels like someone is stabbing me. At times it was worse than others, but it landed me in the ER a couple times because I couldn't handle the pain. It is funny because the doctor didn't think the pain was related to celiac, but it has gone away since I've been gluten-free...and it came back last night after I was glutened by my well meaning husband. It just goes to show that we know our bodies best

One thing I will say being a newbie to the world of celiac is that it definitely has made me more aware of what is going into my body. The first time I went grocery shopping after my diagnosis was an eye-opening experience. It really made me think and make better food choices. Most people who don't have allergies or a disease like celiac never think twice about what is in things. I like the convenience of processed food, but it comes at a price.