Plenty Of Celiac Symptoms...

[The One]

I've been sick for about 8 months now, for 7 of those 8 months I had horrible nausea, stomach pains, eventually I couldn't finish a small meal. At month 5 I was diagnosed with Diabetes, the symptoms got way worse after I had the flu this year, I started having yellow loose stools, I started to vomit more often [when ingesting wheat and milk] I went to see a doctor but they never knew what it was, in my last few visits i've been hinting towards celiac disease and in the last visit the doctor [ a new one] told me he knew what celiac was and that I don't have it, he told me, im going to give you some medicine for your "celiac" you'll feel so much better... i kept wondering what he meant by that, and when he gave me the medicine, it was prevacid!!! god I was so mad. I do not get these symptoms by eating fried foods, in fact, i could eat french fries every day and feel great... I can tell you that because I tried the gluten free diet on my own for about a week and I hadnt felt so good in months! I was doing great! no nausea AT ALL! ...

well, I got back on gluten about three days ago, last night, I came home and there was pizza [i haven't had pizza in months because it was making me sick] so I had a slice, just one slice that I did not finish, so, half a slice let's say... about an hour later I was throwing up again and had a huge rash all over my face!

Here's some of the other symptoms and conditions I have, let me tell you that I've always been a sick child [now I'm 21] :

Recently [while i was on gluten] I've had:

-Diahrrea

-Bloating

-Nausea and vomiting

-Stomach pain

-Yellow stool

-Flatulence [very smelly]

-Weight loss [used to weigh 100Lbs now I weigh 89Lbs]

-I've just been diagnosed with Peripheral Neuropathy [which I think is from celiac instead of diabetes because the swelling was gone while i was gluten-free and is now coming back once i startd eating wheat again]

-Facial rash after ingesting gluten

-Lactose intolerance

-I had pneumonia 4 times as a kid [and I DO NOT suffer from asthma]

-Sensorineural hearing loss [it is caused by nerve damage, something that has been linked to celiac disease]

-Vision loss with photophobia

-Bome pain, always have.

-Recurrent foot cramps

-Short stature [i'm around 4'10]

well i dont think i need to list anymore symptoms, except that doctors always though i had an autoimmune disease but could never figure out which one, they even thought I had Lupus at some point but blood tests ruled it out.

Tell me what you think.

AJ

[AmandaD]

If you have been diagnosed with Diabetes then you should be checked for Celiac - my gastroenterologist even mentioned that to me after I was diagnosed with Celiac...(that vice versa, I might want to be checked for diabetes down the line...)

I've been sick for about 8 months now, for 7 of those 8 months I had horrible nausea, stomach pains, eventually I couldn't finish a small meal. At month 5 I was diagnosed with Diabetes, the symptoms got way worse after I had the flu this year, I started having yellow loose stools, I started to vomit more often [when ingesting wheat and milk] I went to see a doctor but they never knew what it was, in my last few visits i've been hinting towards celiac disease and in the last visit the doctor [ a new one] told me he knew what celiac was and that I don't have it, he told me, im going to give you some medicine for your "celiac" you'll feel so much better... i kept wondering what he meant by that, and when he gave me the medicine, it was prevacid!!! god I was so mad. I do not get these symptoms by eating fried foods, in fact, i could eat french fries every day and feel great... I can tell you that because I tried the gluten free diet on my own for about a week and I hadnt felt so good in months! I was doing great! no nausea AT ALL! ...

well, I got back on gluten about three days ago, last night, I came home and there was pizza [i haven't had pizza in months because it was making me sick] so I had a slice, just one slice that I did not finish, so, half a slice let's say... about an hour later I was throwing up again and had a huge rash all over my face!

Here's some of the other symptoms and conditions I have, let me tell you that I've always been a sick child [now I'm 21] :

Recently [while i was on gluten] I've had:

-Diahrrea

-Bloating

-Nausea and vomiting

-Stomach pain

-Yellow stool

-Flatulence [very smelly]

-Weight loss [used to weigh 100Lbs now I weigh 89Lbs]

-I've just been diagnosed with Peripheral Neuropathy [which I think is from celiac instead of diabetes because the swelling was gone while i was gluten-free and is now coming back once i startd eating wheat again]

-Facial rash after ingesting gluten

-Lactose intolerance

-I had pneumonia 4 times as a kid [and I DO NOT suffer from asthma]

-Sensorineural hearing loss [it is caused by nerve damage, something that has been linked to celiac disease]

-Vision loss with photophobia

-Bome pain, always have.

-Recurrent foot cramps

-Short stature [i'm around 4'10]

well i dont think i need to list anymore symptoms, except that doctors always though i had an autoimmune disease but could never figure out which one, they even thought I had Lupus at some point but blood tests ruled it out.

Tell me what you think.

AJ

[The One]

The worse thing is that they do not want to test me to see wether I'm type 2 or type 1 diabetic, when I am very convinced that I am type 1 [i have certain antibody tests that have come up positive when i was younger which indicates my immunity to have autoimmune diseases] ... I have also read that celiac may interfere with blood sugars and make you have low blood sugar episodes [which i've had plenty of without taking medication]... I just can't believe doctors. I'm doing my best though to find some help elsewhere.

[Riayn]

You really need to find a new doctor. Your diabetes needs to be properly managed and they can't do that adequately until they determine if you have type 1 or type 2 diabetes.

The symptoms you have sound very much like celiacs and you definitely should be tested for it.

Best of luck finding a doctor out there that takes your health concerns seriously. They are out there, trust me. It just may take some searching.

[happygirl]

Where do you live? I recommend you find a local Celiac support group and ask for a knowledgable doctor about Celiac, who is up on recent methods. As someone who has dealt with doctors who knew nothing or incorrect info about Celiac, I am mad at myself that I wasted so long on some of them.

I also recommend Dr. Green's book (he is a Celiac expert from Columbia University). You can order it from any online bookstore (the title of the book is in my signature). He discusses Celiac and related disorders, including diabetes. It is a great resource. Only thing is it does not cover the research of non-Celiac gluten intolerance very much.

Please, please please find a new doctor asap!!!!! PM me if you need help finding a local group....I'd be happy to help. Good luck.

Laura

[Guest cassidy]

Diabetes is definitely something that needs to be taken seriously. I would find a good doctor that will test you completely and help you get it under control. That is something that I wouldn't mess with.

On the other hand, if the diet helped you then is that all the proof you need? I had a tough time with doctors and I have a hard time trusting them since I 3 gi doctors told me that I didn't have celiac, yet I magically got better by going on the diet. If you are ok with not having a blood test (it isn't 100% accurate), then why not go on the diet. It certainly won't hurt you. If it makes you feel better then that is probably all you are looking for.

I don't know how diabetes and celiac work together, but hopefully if the celiac gets better then your body will be stronger and you will be able to control the diabetes easier. Diabetes is something that you need a doctor's help in diagnosing and controlling, celiac isn't. We don't need to be monitored or anything like that if we stay on the diet, so you could try that if you want to.

Hope things get easier and you start feeling better.

[The One]

I guess I definitely need to find a new doctor, I have to wait until we get our insurance, otherwise I am sure I won´t get good treatment. The only reason I want to have a real diagnosis is because I have a lot of other complications and I´d like to know if I indeed have Celiac because it could be the answer we´ve been looking for, and I know with a definite diagnosis doctors would pay much more attention to all the neurological problems I seem to have and finally get the right treatment and hopefully halt all the complications like the hearing loss and hand tremors, and hopefully they give me a right diagnosis for my eye problems... those are things I cant fix on my own.

Laura- I did find a local group (by the way I live in Houston) and I was told the places that do celiac testing usually require you to have insurance, so I guess I´ll just have to wait.

By the way, after having started eating gluten for a week now I have started to feel sick again, so that sure confirms the suspicion.

[super-sally888]

Hi The One,

If you are feeling sick eating gluten please get back on the gluten free diet. You don't have to wait for any doctor to tell you that! Remember ultimately you are responsible for your health, not a doctor. A good doctor is just your guide (cause of his/her knowledge) and partner.... Get off the gluten and maybe all these other things that are going wrong with your health will start improving.

Life is too short to be ill. You got your answer. The most definite test is the elimination test. Sounds too simple - so maybe you don't want to give it credence. So what about the blood test (and not so accurate) - just go with what you know is working.

Sally

[ravenwoodglass]

The only reason I want to have a real diagnosis is because I have a lot of other complications and I´d like to know if I indeed have Celiac because it could be the answer we´ve been looking for, and I know with a definite diagnosis doctors would pay much more attention to all the neurological problems I seem to have and finally get the right treatment and hopefully halt all the complications like the hearing loss and hand tremors, and hopefully they give me a right diagnosis for my eye problems... those are things I cant fix on my own.

Do the diet strictly for a while, then if you still feel the need perhaps a gluten challenge would be enough proof for you. If gluten is contributing to your problems you will heal. Don't bet on doctors being wise enough to see the link between gluten and your neuro problems. Many are clueless and the only thing they can do anyway is to tell you to be very strict with the diet.

The gluten-free diet should also help you control those blood sugars a bit. Do not get too concerned with what type of diabetes you have. But you do need to get a handle on how different foods affect your sugar. If you are on meds you need to take careful watch of your sugars as you heal. I refused meds when diagnosed and would have never known how well my sugar could be controlled by diet if I had taken them. Most likely I would be fighting wars with low blood sugar if I had because my morning sugars are now between 80 and 95 daily instead of the 135 to 150 that they were before.

I have had neuro problems from childhood directly linked to celiac. I could barely walk when diagnosed, I had autoimmune arthritis destroying my joints, daily migraines, fibro and lots more. It took awhile for the neuro effects to resolve but for the most part they have, I even have reflexes again.

Give the diet a good 6 months you may be surprised how much it helps everything else also.

[Guest nini]

positive dietary response is THE MOST VALID diagnostic tool. The other tests can only confirm it if they are positive but cannot ever rule it out completely. You already know your body responds well to the diet. I had a lot of the same symptoms including neurological, except I was overweight instead of losing weight. (but weight loss is more common of celiac for the "classic" diagnosis)

I found that having a positive diagnosis on my permanent medical record is A BAD THING. I was denied health insurance coverage after my former boss cancelled my insurance and I had to find new coverage. I am now uninsured except for medicaid and the medicaid Dr.s do not take me seriously at all even though I have a positive Celiac diagnosis on my medical charts. One Dr. even accused me of being a drug addict and trying to get drugs (I am in the alternative health care field and TOTALLY AGAINST drugs).

You do not need a Dr.s permission to go gluten free if it makes you feel better. My daughter is on the gluten-free diet, and she does not have a positive diagnosis of Celiac. She was diagnosed because of her positive dietary response after blood tests were negative despite me having Celiac and my daughter having ALL the same symptoms I had as a child.

[The One]

I know what you're talking about ravenwoodglass, they put me on Metformin and it helps lower blood sugar a little but not as it should and it gives me a lot of low blood sugar.

nini- Most doctors don't want to recognize celiac but if it's on your medical charts I don't see why they would do that to you, I understand what it's like to not have insurance as I don't have any at all.

super_sally888 - I think what I'm going to do is do an Enterolab test for gluten sensitivity and see how that turns out, after I take the test I'm going gluten free either way though, I know it works so I'm willing to do that to get better.