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amandabear20

I Haven't Gone To The Doctor..

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Hello all!

I am new to this site, and new to the gluten free diet. A friend of mine's mom has celiac disease, and another friend of mine has had it all her life. After many discussions with them as to why im getting these awful headaches almost everyday, and feeling seriously depressed on random days, they suggested i might have celiac disease as well. I have been to the doctor several times for my headaches/migraines, medicines prescribed, but they never worked. They also did a heart ultrasound, and a CAT scan. Again, nothing was found. No explaination. Another issue I have always had is nausea after eating. Then comes constipation for a few days. The feelings I would have after eating were awful. The worst part about feeling depressed, was that I didn't know why I was feeling that way. I would lay in bed, thinking that nothing was good in my life, or nothing could make me feel happy. None of that is true, because I have an amazing boyfriend and things are good in my life, but I was feeling seriously depressed. I wanted to know WHY? I wanted to know what was wrong with my body!

I have been on the gluten free diet for a little over a week now. Things are getting better. Not everything, but I have definately noticed changes. I had a bit of the sad/depressed feelings today, but it went away eventually..

I can go 2 to 3 days without a headache now, which to me is amazing. I don't feel sick after I eat anymore, my bowels are getting better, but I had to add prune juice to my diet in the morning to soften it out. I'm getting sensitive to milk, so I'm assuming I'm going to switch to soy for a bit.

Anyway, what im getting at, is there anyone else that has chose not to see a doctor? I chose not to because the two people I know that had it, got a false negative. They are both on the gluten free diet and are getting better. I just think that if I go to the doctor, I'm going to end up wasting money on tests that might not come back positive, even though I'm very sure I have celiac.

~Amanda

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It's a personal option. Some people NEED to have an official diagnosis, or they won't even try going gluten free. To be honest, there are many, many more gluten intolerant people, than there are celiac's. It's totally up to you.

Now, 9 years later, I wish I had the money back then to be tested, still, it doesn't matter to me all that much. My sister is a diagnosed celiac, went gluten free 5 months before I did. I didn't have any insurance, nor money to be tested, so I went gluten free on my own. My sister has never been gene tested, and still, I am willing to bet, she has the same genes as I do...double DQ1. She was diagnosed with an endoscopy and blood work. We had exactly the same symptoms, right down to iron deficiency. My neuropathy is much worse than hers, yet she has it too. Had I been tested then, I know I would of gotten a celiac disgnosis, and now would be one of those DQ1 that make up that 2% of celica's who are not DQ2 or 8.

I too, have headaches, every day of my life. My neuro asks me when they start, I tell him, "I go to bed with a headache, I wake up with a headache, you tell me, when do they start?" My headaches I think having everything to do with my neck and shoulders, and the doc and I will be discussing this Friday.

If you decide to just stay gluten free without a diagnosis, please also start taking some Vit B12, methylcobalamin...it may help your headaches.

One week gluten free is not enough that you can't still be tested. You have to decide now, and talk to your doctor, if you do want to be tested. Depending on how quickly they can schedule testing, you may have to go back to gluten for a time.

You have a great celiac center in Chicago University.

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I was not financially able to get a dx when it came to my attention that I probably had celiac disease. In hindsight, I'm glad I just went on the diet and never looked back. If I had tested, it might have taken months for a dx and I was suffering. The way I did it gave me immediate relief and I won't go through it again for testing. If there is a reason later, I might go the Enterolab route but I am at peace with my desicion.

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I too, have headaches, every day of my life. My neuro asks me when they start, I tell him, "I go to bed with a headache, I wake up with a headache, you tell me, when do they start?" My headaches I think having everything to do with my neck and shoulders, and the doc and I will be discussing this Friday.

I just wanted to comment on headaches. From the people I have known with chronic headaches, in my opinion, there is usually more than one reason for it. I read Dr. Carolyn Dean's book on magnesium and her section on migraines was informative. She says in the treatment of migraines and chronic headaches you should first remove any food allergies, address sinus prblems, followed by a supplement regimine that includes riboflavin, magnesium and feverfew. Also B complex, I believe, all is outlined in her book. You mentioned your shoulders and neck. I have always have been tight in those muscles but when I started taking the proper amount of magnesium, that loosened up for me.

Here is a small excerpt from her book. This is talking about the relationship between calcium and magnesium in the body.

All the muscles, including the heart and blood vessels, contain more magnesium than calcium. If magnesium is deficient, calcium floods the smooth muscle cells of the blood vessels and causes spasms leading to constricted blood vessels and therefore higher blood pressure, arterial spasm, angina, and heart attack. A proper balance of magnesium in relation to calcium can prevent these symptoms. Calcium excess, stimulating the cells in the muscular layer of the temporal arteries over the temples, can cause migraine headaches. Excess calcium can constrict the smooth muscle surrounding the small airways of the lung, causing restricted breathing and asthma. Finally, too much calcium, without the protective effect of magnesium, can irritate delicate nerve cells of the brain. Cells that are irritated by calcium fire electrical impulses repeatedly, depleting their energy stores and causing cell death.

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If you have the money to get tested DO IT. I personally never got tested because of my insurance/financial situation 1 1/2 yrs ago. It would be nice to know if I have celiac just for the point of telling my family how strict i need to follow the gluten-free diet. I follow it very strictly now because I find that I get sick from cross contamination, but it's hard getting other people to take me seriously....then of course there are times where even an official diagnosis wouldn't make a differance in anyone's mind.

I did see the G.I doc when I finally got insurance, but he told me just to stay on the diet since I was already gluten free for a few months and it would be pointless to put me through everything to get test (going back on gluten etc..., plus it would probably come back negative)

The only conflict I have right now is with my primary doctor who bellieves I don't have celiac and he still wants me to go back on gluten to get tested. He believes it would only take a week of gluten to cause damage!! yeah right!! and he puts the gluten free diet down, saying I shouldn't have to live the rest of my life worrying about gluten and that there is NOTHING I can eat. I wanted to cry when I left his office because it is such a narrow minded approach-

So if you decide to get tested go to a good doctor, otherwise, after thinking about this and writing.....yeah, I guess in some cases official testing wouldnt make a differance....and like someone already said, there are a LOT of people who are gluten intolerant and dont have celiac. I really hope they have a test for that someday!

Good luck with everything!! :)

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I too, have headaches, every day of my life. My neuro asks me when they start, I tell him, "I go to bed with a headache, I wake up with a headache, you tell me, when do they start?" My headaches I think having everything to do with my neck and shoulders, and the doc and I will be discussing this Friday.

This is exactly how my headaches were a lot of times. I did start taking vitamins before, and nothing helped. My sinuses had nothing to do with them, either. I've never had sinus problems in my life. I am now taking a nature made multi mineral/multivitamin every morning with food, so that I'm not missing out on vitamins.

for some reason I just don't think its worth it to get tested, if I'm noticing changes already, and if in at the 3 week mark the fog over my brain goes away and true joy comes into my life, then why get tested? I don't want to risk seeing a doctor that is going to put me down and make me feel like I will never find what is wrong with me. If I feel even better after a month, then why go back on gluten? the two people I know with celiac have diagnosed themselves. To me, its not about getting a diagnosis. If something is working for me, and it's making my headaches go away, I'm not getting sick, etc. then why waste the time with going to a doctor or two searching for an answer? To me, I think I have found the answer to my problems. My symptoms are so strong, and I have never had another explaination for it all.

I have noticed my constipation is getting better. I'm still a little gassy and bloated, but it's not impossible to make a bowel movement like it usually is. Sometimes I wouldn't go for two or three days, but I would have gas. That is all getting much better.

Anyway, what I was going to say in the beginning, my headaches never had a pattern. I tried tracking them, and most of the time they were random. I would either wake up with a headache, or go to bed with one. I thought it had something to do with my menstrual cycle, but it didn't. my gyno changed my birth control pill a few times, and the headaches were still happening.

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If you have the money to get tested DO IT. I personally never got tested because of my insurance/financial situation 1 1/2 yrs ago. It would be nice to know if I have celiac just for the point of telling my family how strict i need to follow the gluten-free diet. I follow it very strictly now because I find that I get sick from cross contamination, but it's hard getting other people to take me seriously....then of course there are times where even an official diagnosis wouldn't make a differance in anyone's mind.

I did see the G.I doc when I finally got insurance, but he told me just to stay on the diet since I was already gluten free for a few months and it would be pointless to put me through everything to get test (going back on gluten etc..., plus it would probably come back negative)

The only conflict I have right now is with my primary doctor who bellieves I don't have celiac and he still wants me to go back on gluten to get tested. He believes it would only take a week of gluten to cause damage!! yeah right!! and he puts the gluten free diet down, saying I shouldn't have to live the rest of my life worrying about gluten and that there is NOTHING I can eat. I wanted to cry when I left his office because it is such a narrow minded approach-

So if you decide to get tested go to a good doctor, otherwise, after thinking about this and writing.....yeah, I guess in some cases official testing wouldnt make a differance....and like someone already said, there are a LOT of people who are gluten intolerant and dont have celiac. I really hope they have a test for that someday!

Good luck with everything!! :)

I'm in a financial situation as well. I'm starting college this week, and I am going back on my dad's insurance, but that doesn't mean there won't be bills to go along with the testing. I just don't have the money with the bill I have already.

thanks :)

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I read Dr. Carolyn Dean's book on magnesium and her section on migraines was informative. She says in the treatment of migraines and chronic headaches you should first remove any food allergies, address sinus prblems, followed by a supplement regimine that includes riboflavin, magnesium and feverfew.

Thank you, Angle. I may have to try and find this book at the library, maybe look her up online.

I too, found a great book written on headaches along...The Headache Cure, by 2 neurologists. I do have 2 slightly herniated disc in my neck, and I do have muscle spasms in my shoulders. This book says if you have ever been in an auto accident where your head hit the windshield, you may have cervicogenic headaches...I did this. It also says if you fall down steps on your bottom, it can cause cervicogenic headaches, which I have also done. I also fell on my tailbone years ago, which can cause these too---any jarring of the back/neck muscles, can cause these headaches. My magnesium level was ok when my levels were checked 1 year ago, but will ask if they can be checked again.

Thanks.

Amanda, only you can decide. I wish I could of been tested 9 years ago, yet I really don't care any ways. I know gluten in my poison, and I do not need a doctor to tell me so.

Luvmoosic4lifeI too had a neuro who refused to believe I am gluten intolerant. I had been gluten free for 8 years, and he said without a diagnosis, he didn't believe I could have a problem with gluten. I told him, "I have been gluten free for 8 years, I will not eat gluten, and that's that, deal with it!" :lol:

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I'm in a financial situation as well. I'm starting college this week, and I am going back on my dad's insurance, but that doesn't mean there won't be bills to go along with the testing. I just don't have the money with the bill I have already.

thanks :)

no prob. that was actually my situation- I was in college and had insurance issues.....OMG insurance sux!!!!

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Amanda, only you can decide. I wish I could of been tested 9 years ago, yet I really don't care any ways. I know gluten in my poison, and I do not need a doctor to tell me so.

exactly :)

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