Please Give Me Your Advice

[Mabc]

In my early 20's I got severe C and diagnosed with IBS. I got no real treatment and no further tests and was sent home to suffer through it. Then late 20's hypoglycemia - "drink a coke" said the doctor. 30's got very very sick and could barely walk with severe fatigue, brainfog etc. I became disabled and still verrry fatigued. Diagnosed with CFS, the only test the doctors tried was for MS. Then they sent me home with "we don't know what's wrong." I was left to try to find answers and control over my health. I've been trying for 8 years to get better, nothing works.

I started learning about Celiac and wanted to try the diet to see if I could find any improvement - maybe even an answer to my suffering. I've been 2 weeks gluten free (I think...I'm mostly eating fruit, veggies, meat, nothing with questionable additives and I am eating allowed sweets like soda pop). Anyway, last week I was invited for hamburgers and I decided to eat it and a couple of cookies and see how it made me feel. As soon as I ate I got severe brainfog, (my son says I was acting like Windows Mellinium lol), I felt like a train had hit me. The next day I got hemorrhoids (spelling?) and C again. Does this sound like it could be Celiac? I want to have hope again that maybe I can do something to get better. This is the first time anything has had any impact for the better, though my fatigue doesn't seem to have improved yet.

Thanks for any advice.

Melodi

[Guest Robbin]

Welcome to the board. It certainly sounds like you have a gluten problem. Your symptoms of brain fog, exhaustion, C, etc. are pretty common. If you need medical validation for yourself or for others, do not go gluten free before blood tests. If you go gluten-free before the tests, it can cause false negatives. If you have a strong support system and the diet is confirmation enough for you, then go gluten free and leave it at that. Some doctors are beginning to acknowledge that improvement on the diet alone is diagnosis enough. Everyone has different recovery patterns. Sometimes you feel worse before you feel better. Don't get discouraged, it will get better. Take care.

[queenofhearts]

Hi Melodi,

I can definitely relate to the decades of misdiagnosis (I'm 50!), though my symptoms were a little different. I'd go ahead & get biopsied by a good GI specialist if I were you, since I think most people take that kind of diagnosis more seriously. Even though my family & friends are basically supportive, some seem to think I'm being a bit extreme in my gluten avoidance. (Worrying about cross-contamination, starch in my aspirin, &c.) It really helps to have an "official" diagnosis, in my case.

One strange thing I've noticed... I've always hated to talk about my ill health, always dreaded coming off as a whiner or a wimp, so I spent many years just not mentioning my aches & pains, chronic diarrhea, fatigue, anemia, miserable periods, brain fog... the list goes on... trying to be a good sport about what I thought was just my lot in life. So now that I finally have an answer & hope for true well-being, a lot of folks seem to be thinking, "but you weren't even sick!" They seem to think I'm giving up all the delicious things I love, carefree eating out, easy, cheap grocery shopping, food sponteneity-- just for the heck of it!?! They don't understand what an incredible blessing it is to have hope at last!

I'm only 2 weeks into the diet & have made some mistakes with meds & supplements, licking envelopes, &c., so I'm still symptomatic, but whenever I think that I may someday soon have real energy & a pain-free body, I cry tears of joy.

In my opinion it was most definitely worth the unpleasantness & expense of the endoscopy to have an answer at long last!

Best of luck to you,

Leah

p.s. You have found a fantastic resource in this forum. I don't know how I'd have made it through the last two weeks without these folks!

[key]

It definitely sounds like you could have celiac disease. I would stay on the diet for awhile if I were you. Like someone else said though, it can be harder without a firm diagnoses, but not impossible. If it makes you sick when you eat it after being gluten free then you won't want to repeat that scenerio all the time. I had borderline blood results and it has taken me a year to figure it all out and I am finally feeling 100% great. It takes awhile to figure everything out. My son also has celiac and he is two. You may want to find a good doctor that will test you.

Leah,

That sounds alot like me too. Friends didn't realize I was sick and I thought it was just my lot in life to struggle and be fatigued all the time. It is easy to be gluten free when you feel great and it is improving your health dramatically. SO happy you finally know what you were suffering with for so many years. My mom is 55 and I want her to be tested, but she swears since she doesn't have D she doesn't have it. She has had C for years and always had lower energy then most people, seems up and down emotionally, etc.

So far she hasn't found a doctor to test her and she isn't persuing it. Very frustrating.

Monica

[queenofhearts]

It definitely sounds like you could have celiac disease. I would stay on the diet for awhile if I were you. Like someone else said though, it can be harder without a firm diagnoses, but not impossible. If it makes you sick when you eat it after being gluten free then you won't want to repeat that scenerio all the time. I had borderline blood results and it has taken me a year to figure it all out and I am finally feeling 100% great. It takes awhile to figure everything out. My son also has celiac and he is two. You may want to find a good doctor that will test you.

Leah,

That sounds alot like me too. Friends didn't realize I was sick and I thought it was just my lot in life to struggle and be fatigued all the time. It is easy to be gluten free when you feel great and it is improving your health dramatically. SO happy you finally know what you were suffering with for so many years. My mom is 55 and I want her to be tested, but she swears since she doesn't have D she doesn't have it. She has had C for years and always had lower energy then most people, seems up and down emotionally, etc.

So far she hasn't found a doctor to test her and she isn't persuing it. Very frustrating.

Monica

It's so great to hear the success stories, really gives me so much hope! You mention your mom-- I strongly suspect my sister is Celiac but when I brought up the subject she was NOT interested in following up on it! It's odd because she's had other food issues, had chronic yeast for a while & ate a very limited diet for that. Maybe she just can't face more restrictions.

I'm curious-- were you diagnosed first or your son? Maybe pediatricians are a bit more tuned in to Celiac. But thinking back, I am sure I had it even as a kid, & nobody brought it up that I know of. (Haven't grilled my mom on that one-- I don't want to make her feel too guilty if doctors did mention it.)

Leah

[Mabc]

Hi Monica, Robbin and Leah,

Thanks! I really know what you mean about sort of pretending I'm okay to the world even though I'm suffering a lot! I don't want to be a complaining wimp either, and I often feel I'm living a lie in a way. When I think about how the real me feels compared to how I try to make it look it is a huge difference. I want to be a cheerful person though, but I also want people to understand. It's a tough balance to find.

I would rather have a definitive diagnosis but I have a hard time getting my doctor to do any referrals. After sending me to the neurologist I think he felt it wasn't financially sound to continue a bunch of tests. But at least this is one I can do for myself. I am slowly learning to take care of myself even if other people don't understand. It isn't easy though because I think if they knew how sick I have been they would offer more support. But trying to tell them how sick I am without knowing the reason seems to fall on deaf ears. (I guess that happens even if you know the reason huh?) Soooo, I'm on my own, but verrrry motivated to give this all I can. Any improvement is such a huge victory for me, even though I have to throw my own party.

Thanks again,

Melodi

[jenvan]

In my early 20's I got severe C and diagnosed with IBS. I got no real treatment and no further tests and was sent home to suffer through it. Then late 20's hypoglycemia - "drink a coke" said the doctor. 30's got very very sick and could barely walk with severe fatigue, brainfog etc. I became disabled and still verrry fatigued. Diagnosed with CFS, the only test the doctors tried was for MS. Then they sent me home with "we don't know what's wrong." I was left to try to find answers and control over my health. I've been trying for 8 years to get better, nothing works.

I started learning about Celiac and wanted to try the diet to see if I could find any improvement - maybe even an answer to my suffering. I've been 2 weeks gluten free (I think...I'm mostly eating fruit, veggies, meat, nothing with questionable additives and I am eating allowed sweets like soda pop). Anyway, last week I was invited for hamburgers and I decided to eat it and a couple of cookies and see how it made me feel. As soon as I ate I got severe brainfog, (my son says I was acting like Windows Mellinium lol), I felt like a train had hit me. The next day I got hemorrhoids (spelling?) and C again. Does this sound like it could be Celiac? I want to have hope again that maybe I can do something to get better. This is the first time anything has had any impact for the better, though my fatigue doesn't seem to have improved yet.

Thanks for any advice.

Melodi

Melodi-

Your story sounds similar to mine--similar progression of symptoms. IBS is such a common misdiagnosis for Celiac too. I would say that your symptoms etc are very much in line with celiac disease. If I were you, I would stop the diet (you have been gluten-free just 2 weeks?) and have some blood work done. When possible, I prefer testing to just diet alone (although, sometimes that's not possible), and if you do have celiac disease it helps provide a baseline and framework for monitoring you in the future. I can give you info on the blood test if you are interested. The longer you are gluten-free, the more skewed the test results will be...so it is important to pursue that quickly if you want to. If you do have celiac disease...be encouraged... It takes a while, but I am now getting back my energy and stamina---what a blessing! I hope my FM pain will improve too. My C has improved so much (that took a few months to improve) and I am more regular than most folks now Since your story is similiar to mine (but more severe with disability), it makes me think you may be one who has a bit longer road to recovery than some. It just varies person to person.

[Sarah8793]

Melodi,

I agree with the others here. If you haven't had any tess yet for celiac disease I would do that. I had bloodwork indicate that I had 2 of the 4 antigens for celiac disease (but not the most specific ones) and then 2 endoscopies now which both came back negative. I have been lactose intolerant for several years and was recently diagnosed with hypoglycemia. I decided to go gluten-free and have been for 3 weeks now. My hypo symptoms are improving a little bit but not completely. I think it takes a while to see big results. Do you still have hypo symptoms?

Sarah

In my early 20's I got severe C and diagnosed with IBS. I got no real treatment and no further tests and was sent home to suffer through it. Then late 20's hypoglycemia - "drink a coke" said the doctor. 30's got very very sick and could barely walk with severe fatigue, brainfog etc. I became disabled and still verrry fatigued. Diagnosed with CFS, the only test the doctors tried was for MS. Then they sent me home with "we don't know what's wrong." I was left to try to find answers and control over my health. I've been trying for 8 years to get better, nothing works.

I started learning about Celiac and wanted to try the diet to see if I could find any improvement - maybe even an answer to my suffering. I've been 2 weeks gluten free (I think...I'm mostly eating fruit, veggies, meat, nothing with questionable additives and I am eating allowed sweets like soda pop). Anyway, last week I was invited for hamburgers and I decided to eat it and a couple of cookies and see how it made me feel. As soon as I ate I got severe brainfog, (my son says I was acting like Windows Mellinium lol), I felt like a train had hit me. The next day I got hemorrhoids (spelling?) and C again. Does this sound like it could be Celiac? I want to have hope again that maybe I can do something to get better. This is the first time anything has had any impact for the better, though my fatigue doesn't seem to have improved yet.

Thanks for any advice.

Melodi