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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.
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Feeling Low
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10 posts in this topic

Hi,

I feel like i just need someone to talk to who understands and doesnt think i'm a hypercondriac.

I found out I have Celiacs 3 months ago. I instantly went Gluten Free and have stayed that way. Before finding out I was always tired and had no motivation, never really depressed but very low and also over weight with lots of stomach cramps.

When i went Gluten Free I did feel better at first, i had more energy and no stomach cramps although I didnt feel 100% I felt an improvement.

Now I still remain without the stomach cramps but for the last week or so I have been back to feeling tired and low and just cannot motivate myself. i am finding doing my job daily difficult and I seem to have no time for my boyfriend I have paid him no attention at all because I just dont feel like I want to.

Is anyone else feeling like this or has anyone else felt like this? Am i going mad? Is this something not related to Celiacs?

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I had about one week of feeling physically great and then lapsed into difficulties and depression. I reacted forcefully to smelling allergens and accidental contact with gluten. Now, after 3 months I am usually feeling okay. I have bloating issues, but my mind is clear and not dizzy except some days. I am struggling to understand how to get even better. I am having trouble making everyday decisions. The diet is causing stress in my family. But I think that this will pass and I have hope for better times ahead.

I hope you have hope too.

DT

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I went seriously gluten free (was gluten light for a long time beforehand) about three months ago as well. Like you, I felt a lot better at first, and felt very hopeful. However, over time I started developing more food intolerances and things weren't improving as quickly as I wanted. The rational part of me realizes that healing takes time and to be patient, but it is so hard to be patient when you have been struggling with something for so long.

Motivation is a problem for me too, which is bad, as I'm trying to complete a Ph.D. right now. Every day feels like a battle and my life basically consists of making sure my schoolwork doesn't fall apart, cooking (because now I need to make a lot of things from scratch), trying to eat when I can (because I've lost so much weight being sick), resting, and trying to find some time to spend with my boyfriend so he doesn't get even more frustrated with me.

You are not going mad. Life is just really hard sometimes and it takes its toll on us. Just keep moving forward like you have been doing, and try to feel good about the improvements you do see -- I find that helps a lot. Take care :)

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It takes a while to figure out how to really avoid all cross contamination and to customize your food choices so you can function. Do not forget, you have an auto immune disease, and many people with the kind that needs to be medicated are given a sort of "pass" by society to be .... less than energetic, yet we are supposed to be "normal" other than the food selection thing. :blink:

For me to pass as "normal" in some activities I have to do a ridiculous amount of planning (make sure food is packed to take along, plan what times to snack to maintain energy) and then I have to do a ridiculous amount of physical conditioning and exercises. Carefully, so I don't injure myself. Plus I have to remember to still take vitamin and mineral supplements. And then I have to allot "recovery time" the day after. This is normal for me, and many people here, but actual normal healthy people have no freaking clue.

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Hi,

I feel like i just need someone to talk to who understands and doesnt think i'm a hypercondriac.

I found out I have Celiacs 3 months ago. I instantly went Gluten Free and have stayed that way. Before finding out I was always tired and had no motivation, never really depressed but very low and also over weight with lots of stomach cramps.

When i went Gluten Free I did feel better at first, i had more energy and no stomach cramps although I didnt feel 100% I felt an improvement.

Now I still remain without the stomach cramps but for the last week or so I have been back to feeling tired and low and just cannot motivate myself. i am finding doing my job daily difficult and I seem to have no time for my boyfriend I have paid him no attention at all because I just dont feel like I want to.

Is anyone else feeling like this or has anyone else felt like this? Am i going mad? Is this something not related to Celiacs?

Yes, for me the emotional symptoms were and remain the most powerful. After the first 2 weeks I felt really good and felt like I was making strides. Then it hit me again and i felt so dissapointed and discouraged, and I went into a deeper hole than i was even before i found out. It is a roller coaster ride, i would say even now 5 months into the diet it is challenging and has its ups and downs. If you remember math class my feelings go up and down like a wave, but the trend line is pointing up, if you know what i mean.

After 5 months I can objectively see how much better I feel, but in the moment, when something bad happens, or you eat a little gluten and react, it can feel like the whole effort was for nothing and you are a failure. You have to resolve to push through the tough moments. I still fight that battle most days.

It is nice to be able to come to the forum and get reassurance and support. You are headed in the right direction.

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Hi there,

Sorry you are feeling low. One thing I wanted to mention is you may want to have your Dr. check all of your vitamin levels if you have not already. I was diagnosed two years ago and was doing great is at first then felt miserable again on and off for the past year. I had thought maybe I was getting accidently glutened or even worse maybe this was what my life was going to be like going forward. I finally went to my endocrinologist and had her run a full blood panel and we uncovered that I have a B12 deficiency. I am now being treated for that and most all of my symptoms are better. My symptoms were stomach pain, extreme fatigue, neuropathy, strange rashes on my legs, and tachycardia. I was also feeling anxious and depressed which was really unusual for me. So while it takes time for sure to heal and deal with everything with this diagnosis make sure you are not overlooking something else that may be causing some of your symptoms. Hope you start to feel better soon!

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It takes a while to figure out how to really avoid all cross contamination and to customize your food choices so you can function. Do not forget, you have an auto immune disease, and many people with the kind that needs to be medicated are given a sort of "pass" by society to be .... less than energetic, yet we are supposed to be "normal" other than the food selection thing. :blink:

For me to pass as "normal" in some activities I have to do a ridiculous amount of planning (make sure food is packed to take along, plan what times to snack to maintain energy) and then I have to do a ridiculous amount of physical conditioning and exercises. Carefully, so I don't injure myself. Plus I have to remember to still take vitamin and mineral supplements. And then I have to allot "recovery time" the day after. This is normal for me, and many people here, but actual normal healthy people have no freaking clue.

What kind of mineral supplements do you take?
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It is normal to have ups and downs. After two or three weeks I felt fantastic, then I started sliding back downhill. Some of it was due to other intolerances rearing their ugly heads, and some of it I'm sure was due to unintentional glutenings. Have you read the newbie thread? It will point out the places gluten hides, such as scratched teflon pans, your toaster, collanders, and even cosmetics and shampoos. Also, you must make sure supplements and medications are gluten-free.

But even if you are 100% gluten-free and have no other intolerances, you are still healing and are bound to have setbacks. It took me a year before I started feeling consistantly good, and even now there are days when I wonder where my energy went.

But hang in there and know that this is normal, and that you're not alone. We are all here for you. :)

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Definitely have your B12 and your vitamin D levels checked. A deficiency in both of these can affect your mood as well as cause other symptoms. Also, it is normal to have good and bad days. I went grocery shopping Saturday afternoon. Half way through my trip I decided it was not the best day to go to the grocery store since I was feeling sorry for myself because of all the yummy things I can no longer eat, which humans really should refrain from eating. Of course it could be PMS. :)

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So sorry to hear that you're not feeling great - I think I'm in the same place as you right now.

I was diagnosed in May and was doing pretty good and was starting to feel more confident. At this point, I'm pretty sure that I was glutened 2 weeks ago, because ever since then I have been falling asleep on my desk at work every day and its horribly embarrassing. In fact, one of my coworkers asked me today if I was ok - I was mortified. My GI system has been a bit funny so I've been taking it easy. I feel like the upswing is coming soon.

From reading other posts on here, it sounds like we will go through our ups and downs for a while before we stabilize. I just keep reminding myself that there IS a light at the end of the tunnel and I'm doing the best that I can - it sounds like you're doing a great job too. Keep hanging in there and come onto the forum whenever you need support!!

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