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leikela

New And Not Sure

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Hello everyone. I have been reading this board for awhile, you are all so knowledgeable on Celiac and similar conditions so i thought i would describe my symptoms and go from there. To those of you who venture all the way to the end, thanks in advance ;)

About a year ago, I had my very first noticeable symptoms. I was at work when all of the sudden I had this wave of nausea, lightheadedness, what I call "black vision" where everything kind of goes dark, i was clammy and shaky, yet hot at the same time. I had to sit down and put my head between my legs. My breathing was ragged and I had heart palpitations.

A week later, while at work again, the same thing happened. This time with severe stomach pains. The pain was so horrible. I explained to my co-worker what was happening and she mentioned hypoglycemia and that i should eat some protein - well i did and it didn't really help me much. I basically just had to ride it out and wait for it to pass.

Since then I have been scouring the internet looking for different explanations to my problems. I started keeping a "health calendar" - every day since then i have taken my body temp. in the mornings, and I will write down everything i feel during the day.

Mid-December i dramatically lost 10 lbs, without any effort on my part. It has always been extremely difficult for me to loose weight. I have to really restrict my calories and workout vigorously in order to see any results at all. I was pleasantly surprised, so i started eating healthier and working out to aid the process. By January 1st, I had lost over 15 lbs. Then my weight started going back up, fluctuating back and forth. I didn't think to much of it. I started switching all of my foods (pasta's, bread, cereal... everything!) to whole wheat/whole grain. I am a grain addict, so i loved it. Then, even though I was eating over 25 grams of fiber a day, and i was taking a probiotic, and drinking a lot of water - i had some serious constipation. My stomach was going into spasms all the time. Basically all i could do was roll up in the fetal position and ride it out. I have had stomach cramps before in the past (not frequently, but enough to be annoyed by them) and i have always said they are worse than any menstrual cramp i have ever experienced. They have started becoming more frequent lately.

After this i got health insurance and made my dr. app. When i was preparing for my first doctors visit, i reviewed my health calendar, and wrote all my symptoms down and tried to somewhat find a pattern in it. I really wasn't able to find much of a pattern (unfortunately i didn't write what i ate...). But i did notice that I often wrote that i was very constipated and bloaty. It was the most common occurrence. I was still having my bouts of "hypoglycemia" symptoms, that were becoming more and more frustrating.

In the beginning I had been trying to find answers for my dizzy/shaky/weakness in muscle spells - but i had never thought my digestive problems (that i have had for years) could be connected to it.

My mom and maternal grandmother have/have had thyroid diseases. My brother has type 1 diabetes. So i looked at those initially - after explaining all of this to my doctor she ran blood work - only to find out everything was "normal". My thyroid levels were "perfectly fine" and i didn't show any signs of having hypoglycemia after my fasting lab.

So during my second Dr. visit, she ran hormone levels to see if i had PCOS. Those came back negative as well, thank God.

After i switched all of my foods to whole grain, not only did i have MORE painful constipation/bloating/gas, but other symptoms started popping up as well, things that i had before - but didn't bother me much. My joints started aching, no matter what i did. The shakiness in my hands and arms became more bothersome. I could feel myself twitching randomly. Also my basal body temp. is averaging in the 96. range, but i would have bouts of "fridgedness " before bedtime. I would be so cold, i would sleep in my robe/tons of blankets, a scarf, socks and flannel pj's! I took my temp and during all those spells it would be in the 94 range. I was having tons of trouble concentrating. I almost felt like i was becoming dyslexic. I had more problems with getting "black vision" when stood up after sitting down, and it would take awhile for it to go away vs. going away immediately. I thought i was going to pass out. I was having painful almost like stabbing sensations by my heart. It would feel like i had adrenaline racing back and forth down my arms, they were all jittery. My fingers and toes would become numb frequently. Also, from the very beginning when my first symptoms became pronounced i was suffering from this chronic fatigue. I would get a full nights sleep, and within for hours of waking up i would feel drugged. This has been the most common symptom (besides the constipation) i have had.

I explained all this to my DR. she took and EKG of my heart, which came back fine, she ran blood work for arthritis, PCOS, diabetes, thyroid disease, blood count, and one other thing which has completely left my mind at the moment... lol. All came back "normal". I am calling today to make another app. and to ask for all the blood tests results sent to me so i can see what she considered normal. She had no explanation for the chronic fatigue, achy joints, shaky/jitteryness. She said that we can treat the constipation easily and has put me on a regimen of Miralax , 2 stool softeners, and an anti-acid everyday (thinking it was heartburn i was having). She said to call back after a month and explain my progress. Well I have been following these orders for a month now and my symptoms are worse. I just went through the wedding of my sister, stressed out doesn't even come close to describing that experience. I wasn't able to eat without feeling horrible. I lost weight. It was miserable. I was really starting to feel depressed (which is so unusual for me!). I was so frustrated over this whole ordeal and not being able to figure out what was wrong with me. I started to feel like i was loosing my mind! Is this all in my head?!

Now that the wedding is over, my symptoms have only become worse. Like they were shot into hyper-mode by the stress. My arms feel extremely jittery, even on laxatives and stool softeners i am miserable. I will go to the bathroom everyday, but it is very small - and when i take a day off the Miralax, the next day i won't be able to use the bathroom and i am extremely uncomfortable. My stomach has been making very loud noises, that you can feel when you touch my stomach. I will get very bloaty, dizzy, fatigued, clammy. My stomach becomes distended, dramatically. It looks like i am 5 months prego! Sometimes i feel like saying - to heck with sucking my gut in, i will just let my distended gut stick out and say "why yes i am pregnant, thank you, it's a girl" (note sarcasm ;) lol) When i explained all this to the nurse she said "My, you're just falling apart aren't you?!" I am 21, i have about 10 -15 or so lbs to lose (that has been the impossible task)! I mostly have at least one of these symptoms all the time, sometimes i feel perfectly fine. Then all the sudden (like recently) all the symptoms are happening at the same time. It frustrating. I can't wait to talk to my DR. and tell her i want to run a celiac panel. This is the only thing i have seen that fits perfectly to what i have been feeling. In some twisted way, i almost hope that it is celiac, simply so i can KNOW what is going on!

Most of the stories i have read are about people with the big D, anyone out there who had the opposite problem like me? I would appreciate any feedback!! I'm sure i have left something out, and i'll smack myself for it later :) But this is basically my story.

Any thoughts?

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Wow - for what it's worth, my story is almost identical to yours. My top symptoms are chronic fatigue and constipation, even after being on thyroid meds for hypothyroid I am still very, very tired. I have a lot of the same digestive issues and I have a history of having a very low basal body temp. and my body just shuts down on occasion and I get clammy and dizzy to the point that I just pass out (although this hasn't happened in a year or so). I also have the joint pain on gluten. My celiac bloodwork came back normal, but I expected that to be the case because I wasn't eating wheat due to having a wheat allergy. Since I'm not going to eat wheat in order to get accurate results, I recently ordered the genetic tests from Prometheus labs and should be getting those results back sometime this week.

I definitely am with you with almost wanting it to come back positive, so I can put a name to all the craziness that I feel is going on with my body and so that I'll know what I need to do to get well again. Keep us posted on how things go!!!

I know I'm really not much help, but you can at least know that you're not alone!!

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I was diagnosed with Celiac on November 4th 2009.

I had very similar symptoms to you, and by the time I was diagnosed I had quite a lot more symptoms too.

I think you are on to something. I was the one that finally found out about Celiac and thought that it sounded like what I had. - Don't underestimate yourself, if you think it could be Celiac or gluten intolerance (which in my opinion may be the same thing) then pursue it. Doctors often don't know a lot about it, so you have to be your own advocate.

Both of you should keep in mind that tests can be false negatives, but if you try the diet and the diet works then it is a diagnosis in it's self.

I would suggest testing first, but still try the diet if it comes back negative.

I think it sounds like you both very likely have a problem with gluten

Good luck to you both - I hope you feel better soon!

~Sarah

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Please be careful with those grains!

I'm actually on here because of my son, but I myself have ulcerative colitis, and I do know I definitely have gluten issues.

My symptoms were very much like yours. I thought I'd eat healthier, so I switched to whole grains, skim dairy, and beefed up on my fruit intake. I sound a lot like you. I thought my body just needed to adjust, then I was told I needed to exercise more, stick with the whole grains, was told to try Metamucil, or other fiber therapy, given Miralax to take daily (2 doses), also colace, milk of magnesia, etc, etc, etc. Finally, I started bleeding, and was finally diagnosed with Colitis. Grains and fruit (and most dairy)- basically fiber is NOT my friend. I have been seen for so may different things it's not even funny. I was even on Prozac for awhile. I could go on, but I'll spare you. Please be careful- I fell for that early on. Not saying you will end up that way, but I really think I might know how you feel. Colitis (and Crohn's) is very difficult to control- I view them as what happens when your gut is in distress, and yes, I do think they are effected by diet. Mine as never gone into remission since I was diagnosed 8 years ago.

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Thank you all so much for your feedback! I made a Dr. appointment right after i wrote this post. I go in tomorrow morning. I am taking some meticulous notes with me so i don't leave anything out! I'm not a very bold person, but I WILL make sure i get that blood work done!

Again thank you all SO much! It's so good to know that you're not alone and going crazy!

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Just as a follow-up, I tested positive for DQ2.5 heterozygous, so based on symptoms and genetics, I am newly diagnosed as celiac. On the one hand, I'm breathing a sigh of relief that we have answers, but on the other hand I'm still in a little bit of shock. Not that I'm necessarily surprised that I have it, but overwhelmed by the ramifications that the strictness of the celiac diet entails and by all the little lifestyle changes that will need to be made. Hope your doctor appt. goes well.

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Just as a follow-up, I tested positive for DQ2.5 heterozygous, so based on symptoms and genetics, I am newly diagnosed as celiac. On the one hand, I'm breathing a sigh of relief that we have answers, but on the other hand I'm still in a little bit of shock. Not that I'm necessarily surprised that I have it, but overwhelmed by the ramifications that the strictness of the celiac diet entails and by all the little lifestyle changes that will need to be made. Hope your doctor appt. goes well.

Congratulations on your diagnosis, now you won't have to wonder any more :) Hopefully you don't have to many troubles going gluten free, it's bound to be a hard road! :S

I spoke with my Dr. this morning and after telling her i was STILL constipated and have more problems on laxatives and stool softeners - she went "Oh WOW!" and said i will be referred to a GI. She agreed with me that Celiac could be the problem (I was so thankful she didn't shut me down like so many other people have complained about), and ordered a "full celiac panel." She kind of left the room before i could make sure she was talking about the total IgA. We will see soon. And if I'm going to a GI, then I will probably have the endoscopy done.

We will see...

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