Please Help

[amberlink09]

Hi,

I have already posted on another forum but I think I need some more help. I am pretty desperate and worried at this point. I have been moving around a lot lately, my family moved from Houston to San Antonio over the summer and then I moved to Austin for college, so I don't really have a steady doctor. I was diagnosed by a gastroenterologist a few months ago, they checked my vitamin and iron count and bone density. Bone density and vitamins came back fine but iron was low. I went on Ferrex and decided to take a multivitamin also. I have been really sick for the past few months, at least once a week I will get really sick with a bad fever, but the next day it is gone. The other symptoms sometimes remain for the rest of the week though. I usually have a sore throat or cough and congestion, I get lots of headaches and dizziness, occasional nausea, chills and night sweats. I have been to my college's health service and an urgent care and they just tell me I have a virus. They tell me to take some cold medicine and never even do a blood test. Also, I have a hardened lymph node or something on the back of my neck. I have tried to tell my doctors about it but they dismiss me and say its normal. But its been there for about 9 months, it doesn't cause any pain or anything, it just worries me. Also, I know it is highly likely that I am just too worried, but I'm only 18 and I'm just not ready to be really sick yet. I also know that it is highly likely that since I am living in a dorm and my immune system is probably weak I am just picking up a lot of viruses. It would be nice to talk to someone else who has been through this though. also if anyone has suggestions on doctors in the San Antonio area who actually listen that would be fantastic.

Thanks!

[TrillumHunter]

Take a deep breath.

How do you know you have a fever once a week? Are you taking your temperature every day?

What are you calling a fever? 98.6 is a baseline. Some people are hotter or colder normally. It's also normal for your temperature to vary through the day.

Are you sick EVERY day or does it just seem that way?

If you are taking a multi and iron, the multi should NOT have iron. You can get too much iron.

If you follow the diet, celiac won't make you really sick. You aren't destined to be sick because you have celiac.

Calm down, think about what you are saying, and come back a tell us what you think.

It's going to be okay and you'll be able to figure out what is going on.

[amberlink09]

Take a deep breath.

How do you know you have a fever once a week? Are you taking your temperature every day?

What are you calling a fever? 98.6 is a baseline. Some people are hotter or colder normally. It's also normal for your temperature to vary through the day.

Are you sick EVERY day or does it just seem that way?

If you are taking a multi and iron, the multi should NOT have iron. You can get too much iron.

If you follow the diet, celiac won't make you really sick. You aren't destined to be sick because you have celiac.

Calm down, think about what you are saying, and come back a tell us what you think.

It's going to be okay and you'll be able to figure out what is going on.

Hi,

Sorry I was just incredibly frustrated after going to the doctor this morning. And yes I do take my fever almost daily, its usually between 97.5 and 98.6 or so.

However, nearly every Saturday it goes up to 100 or 101.

When I was buying my multivitamins I got the pharmacist's help to make sure I wasn't going to overdose on iron.

I'm not always sick every day, but I am usually tired and slightly dizzy with a headache or body aches nearly every day. The colds and viruses are what usually only last for one or two days, and those are what come with the fevers. I also have night sweats at least a few times a week.

I know I'm not destined to be sick because I'm Celiac, I have just been sick a lot in the last few months, more than I ever have.

Something else, I have noticed my heartbeat will randomly speed up. Not temporarily but for hours. My normal heartbeat is usually 60-75, and it will go up to 85-100. I know that's a normal range but I saw that this could be a sign of Ferritin deficiency, which could be the route of my problems.

I'm 18, 5'2", and 110 pounds. I exercise and I have no other disorders. I hope that's enough information.

Thanks

[Shess0816]

Hey! Welcome to the forum! Sorry you haven't been feeling well This is a great place to get some support though! I've definitely had to use all these wonderful people a bunch of times! They are always great though!!

I'm only 27, and I started having all my major Celiac symptoms when I was about 17 or 18, so I understand your feelings of not wanting to be so sick at such a young age. I was not diagnosed until March 2009. I understand how frustrating doctors are! Fortunately, my family doctor here where I live trys very hard to stay up to date with all the latest issues -- so he was the one who actually diagnosed my Celiac.

When were you diagnosed and have you been on the gluten free diet long? I haven't read any of your other posts, I don't think, so maybe you discussed that earlier, so sorry if you did!

I definitely had and have a lot of the same symptoms. I also got lots of headaches, diziness, nausea, bone and joint pain. I have actually had a cold almost continuously since I was about 17. I used to get night sweats all the time, but those have gone totally away since going gluten free. The doctor's can't find any reason for it, but I have a little couch most of the time and my head is congested a lot. I also get a lot of fevers...and I too check my temp daily

They can't really seem to find reasons behind most of it, so I tend to think it is just my weird immune system's way of dealing with things! My boyfriend is a college athletic coach, so I think that maybe he brings a lot of things home with him from all the students....who knows!

But I really hope you start feeling better and like I said, everyone on here is more than willing to be supportive when you need it! It's a great place to come!

[TrillumHunter]

Every Saturday? So what's going on on Friday night? Are you having drinks or staying out late? Don't worry, I'm not going to tell your folks! These things could make you a bit unwell on Saturday.

Your heart rate could be so many things. Simple things like Red Bull, smoking, and stress of this new situation could be at fault. Could you be pregnant?

Is there any chance you can get a CBC with a ferritin level? That might answer some of your questions.

You might try going to your doctor and telling them your former GI said you should have be checked for anemia twice a year. Say this with CONFIDENCE! Say it calmly and with authority.

Keep thinking about how you are feeling. If you feel unwell, think about what you did the day before. Also, since you are so newly diagnosed, remember it takes some time to heal. Sometimes as long as a year to feel better.

It's good to check in with other people who have celiac. There is much to learn.

Oh, the lymph node--my youngest son has something like that as well. It's at the base of his neck and it bothers me so much I ask about it every year. But it is nothing, just his normal anatomy and not a lymph gland at all.

Keep checking in and take good care of you!

[GottaSki]

Welcome and I am sorry that you are feeling poorly.

Couple thoughts:

Is it possible that you are feeling more ill on Saturdays because you don't have class or other commitments? If you are busy all week long and still healing since your recent diagnosis you may just need a down day to rest. If so, give yourself permission to rest. Of course this wouldn't explain the fever each Saturday.

You are living in a dorm. Have you been tested for Mono? Your post sounds very similar to what one of my sons went thru a few winters ago...we couldn't figure out why he kept getting sick...while running all kinds of autoimmune tests because his sister has Lupus the docs ran one that indicated he had had mono. I'm told that they can detect if you've had it even if you don't currently.

Are you on a meal plan? Do you think you could be getting glutened?

I do hope you are feeling better soon.

[amberlink09]

Hey everyone thanks for responding

First of all I was just diagnosed a few months ago, at the beginning of the semester in September. I am on a meal plan but I can't use it because the cross contamination in the cafeterias is so terrible that I gave up on eating there. So I only eat food that I can make with a microwave and a refrigerator (we aren't allowed toasters or anything).

As for drinking, I don't. At least not often. I have a strange reaction to alcohol, the slightest bit of it makes me uncomfortably hot unless I eat a lot while drinking.

I definitely don't allow myself rest during the week. I sleep an average of 4-6 hours a night. I know, this isn't healthy, but I'm in college and I have a job so I don't have any more time than that. And I push through my illnesses so that I can work. This week I have an ear infection, sinus infection, and throat infection, but I have finals so I can't take a break.

I haven't been tested for mono, not a single doctor has run a blood test on me. I actually didn't think about mono though, because when one of my friends had it she couldn't get out of bed for two weeks or so. So I may check into that when I go home and finals are done

Thank you for your reassurance about the lymph node!

[calico jo]

I definitely don't allow myself rest during the week. I sleep an average of 4-6 hours a night. I know, this isn't healthy, but I'm in college and I have a job so I don't have any more time than that. And I push through my illnesses so that I can work. This week I have an ear infection, sinus infection, and throat infection, but I have finals so I can't take a break.

I haven't been tested for mono, not a single doctor has run a blood test on me. I actually didn't think about mono though, because when one of my friends had it she couldn't get out of bed for two weeks or so. So I may check into that when I go home and finals are done

I'm sorry you're having troubles. I used to be sick a lot, too. It seemed to hit every Sat, as well. I think it was because I was pushing myself all week long, then when Saturdays would come, my body would say" That's it, you're sick, stay in bed!" I wonder if your lack of sleep could be a big part of this. Bodies need the sleep to rejuvenate.

You say you are staying away from gluten, but what is the rest of your diet like? Do you drink diet soda? Aspartame is REALLY bad for you. Processed foods can also make you not feel well. Do you get enough vitamin D? There is a lot of GOOD research out there showing Vit D (has to be D3, not D2) prevents more than 70% of all kinds of illneses. Drink enough water! I would say filtered or spring water, too. City water all over the country is being tested and showing high amounts of prescriptions (people flush stuff down the toilet and it gets recycled into drinking water- blah!). You might also have an intolerance to something else that you're not aware of yet.

The fever would be a concern, though, because that usually indicates an infection of some sort. I can't believe your doctors haven't conducted any kind of blood test! I'd insist on it. After all YOU are the patient and paying them! Push the doctors until they figure this out, but in the meantime, keep track of everything you are eating and see if you can find some correlations. Good luck.

[Wolicki]

Before going gluten-free, I had fevers almost every weekend, and my whole body hurt. The good news is that it all went away almost immediately. I am wondering about cc, and if you have checked all your products and med/supplements for gluten? shampoo, toothpaste, lotions, hairspray, etc. If your viatmins do not say gluten free on the bottle, call to make sure.