Diagnosis, Diet, Symptoms Etc

[prinsessa]

I had a negative blood test, but the doctor told me after he did them that he forgot to test for something. I didn't want to redo the blood tests because I started going gluten free right after I had them. I didn't want to do a biopsy because I already has a positive result from the gluten free diet.

I had pretty much all the symptoms listed except constipation. I only had stomach problems for 6 months before getting tested, but I had some of the other problems for much longer (just didn't know what they were from).

[kabowman]

Andrea, thanks for the birthday wish - I had a nice quiet 40th birthday - just what I wanted and will spend the rest of the weekend relaxing and continuing my birthday.

I finally figured out my newest problem - it was the ground beef I have been using for over a year. Something must have changed recently so I will chat with the meat cutters where I get my meat. I get other ground meat there and don't have any problems with that so it is just with the ground beef. Hubby said we can start making our own - he came with a meat grinder, who knows why, but it will now come in handy.

[emcmaster]

Before diagnosing myself and going gluten-free, I'd already found that I was sensitive to dairy and high fat foods. Even after removing dairy and high-fat foods, I was still very, very bloated (I looked like I was 6months pregnant all the the time) with horrible stomach pains and constipation.

The bloating started to go away after 3 days on the diet and stays gone unless I accidentally get glutened. The constipation is still sometimes a problem, but not nearly as bad as it was.

[Guest laferriere]

I was just curious at to people's diet before diagnosis, whether official or self diagnosis.

Also whether anyone had symptoms that something was wrong etc.

If you think of things not mentioned on the poll, please write and include it if you wish.

I always miss something.

To get the ball rolling, we were on a vegan diet before allergy tests. Then tested through enterolab with 3 out of 4 of us positive. We are now back on a meat eating diet.

No symptoms before diagnosis through enterolab, but daughter had tummy troubles and diarrhea after eating a gluten cookie ealier this week (from Grandma). Not sure in oat granola also contributed.

Hi!

I also wish I could mark more symptoms- constipation, ab pain (especially at night), back pain, undigested food in stool, distention, bloating, mouth sores, cracked lips, red, red eyes... I had "mild" positive bloodwork after being gluten-free for 4 and a half months. Gastro doc is of "Gold standard" school so no diagnosis of celiac. I feel better gluten-free although still have some symptoms. I realize it seems to take time. I intend to do Enterolab just to see. People on this board seem to think positive tTg means celiac and it does seem meaningful especially to be positive when I had gotten most of the gluten out of my diet already. I certainly think gluten intolerance is greatly underestimated and I wish the Gis would start getting up to date on all this! Thank you.

lisa

[Guest BERNESES]

I had "borderline postive" bloodwork, positive dietary response, negative endoscopy (after 2 months gluten free I did a ten day gluten challenge- not worth it as it wasn't long enough and it just made me super sick), and finally genetic testing confirmed it. Long road but I had been gluten-free for about a year when I did the gene test and I wasn't about to change anything!

Primary symptoms were black, tarry stools (I checked diarrhea), profound depression, exhaustion and lost 25 pounds.

I was eating a lot of processed foods at that point because I was in grad school, busy and not a lot of time to cook. Boy did THAT change!!!!! fast!

[Lauren M]

From what I have read on this forum...it is possible to have a false negative but not a false positive for the biopsy. How long have you been gluten free. Are you aware that soy can also do damage to the intestines (according to what I've read online, possible an excerpt from the dark side of soy). Do you have any other food allergies that could be causing problems? Have you or do you want to try a gluten challenge?

Andrea,

Thanks so much for your reply. I don't have any other food allergies/intolerances that I know of. I was diagnosed with celiac disease in Oct. of 2003. I don't think I ate much soy before the biopsy; if anything, I eat more soy products now (I'm a vegetarian).

Truthfully, I'm flat out SCARED to do a gluten-challenge. But I go back and forth; the doctors say that my bout with Pancreatitis was likely caused by Celiac, and I never ever want to experience that again. However, if I don't have to be gluten-free my entire life, I would like to know! Dr. Fasano seems to be pretty sure I'm Celiac (w/the positive biopsy) but I'm just confused. Anyone want to offer opinions on what they would do if they were in my place??

- Lauren

[Lister]

failed bloodwork, no endoscopy, slight positive dietary change, found damage thru upper GI

i was asking to get something because my diet consisited of fast food everyday besides weekends for breakfast lunch and dinner and im not joking(it was free i work for a fastfood reasturant)

[aikiducky]

Lauren, you can't get a more positive test than a positive biopsy. It would not make sense to check the biopsy with a blood test, usually they do the biopsy to check if the blood results were correct, you see what I mean? Especially since your doctor seems to be one of the celiac experts.

Pauliina

[AndreaB]

Andrea,

Thanks so much for your reply. I don't have any other food allergies/intolerances that I know of. I was diagnosed with celiac disease in Oct. of 2003. I don't think I ate much soy before the biopsy; if anything, I eat more soy products now (I'm a vegetarian).

Truthfully, I'm flat out SCARED to do a gluten-challenge. But I go back and forth; the doctors say that my bout with Pancreatitis was likely caused by Celiac, and I never ever want to experience that again. However, if I don't have to be gluten-free my entire life, I would like to know! Dr. Fasano seems to be pretty sure I'm Celiac (w/the positive biopsy) but I'm just confused. Anyone want to offer opinions on what they would do if they were in my place??

- Lauren

Lauren,

If I were in your shoes I wouldn't do a gluten challenge. It's not worth the sickness and pain it can and probably would cause for you. As far as soy, please don't eat too much of it. It may be interfering with your intestines healing. Do you or can you eat eggs and dairy products. You can have up to 7 eggs a week. I somtimes have more than that. You could eat two eggs every other day for some protein. If you feel that you could have adequate protein without soy, maybe you could cut it out for 2-4 weeks and see if you do better. I don't know if you are against eating meat or not but the expensive, natural, free range, organic meats are good. We have gone back on a meat eating diet due to so many allergies that made the vegan diet totally unhealthy for us. Just something to think about as far as elminating soy for a little while and seeing how you feel and then bringing it back it to your diet and see if you feel different.

Everyone else who has posted thank you for your responses. It's nice to have everyone's story together. I'm glad to be part of such a community as is found on this forum!

[Lauren M]

Paulina and Andrea,

Thanks for reassuring me, I guess I know in my head that I have Celiac, but have "wishful thinking" sometimes!

Lauren,

If I were in your shoes I wouldn't do a gluten challenge. It's not worth the sickness and pain it can and probably would cause for you. As far as soy, please don't eat too much of it. It may be interfering with your intestines healing. Do you or can you eat eggs and dairy products. You can have up to 7 eggs a week. I somtimes have more than that. You could eat two eggs every other day for some protein. If you feel that you could have adequate protein without soy, maybe you could cut it out for 2-4 weeks and see if you do better. I don't know if you are against eating meat or not but the expensive, natural, free range, organic meats are good. We have gone back on a meat eating diet due to so many allergies that made the vegan diet totally unhealthy for us. Just something to think about as far as elminating soy for a little while and seeing how you feel and then bringing it back it to your diet and see if you feel different.

I've been a vegetarian for 20 years of my life (I'm 24), so going back to meat is out of the question. I've heard bad things about soy here and there, but I figured it was just hype. Soy is definitely a big part of my diet. I do eat eggs and dairy products (and again, who hasn't heard bad hype about milk?), as well as beans and nuts, but I don't feel like that's enough protein on its own. I've been strictly gluten-free since Oct 2003, so I should be OK to eat soy right? I might try an experiment though... thanks for the suggestion.

- Lauren

[Guest BERNESES]

Paulina and Andrea,

Thanks for reassuring me, I guess I know in my head that I have Celiac, but have "wishful thinking" sometimes!

I've been a vegetarian for 20 years of my life (I'm 24), so going back to meat is out of the question. I've heard bad things about soy here and there, but I figured it was just hype. Soy is definitely a big part of my diet. I do eat eggs and dairy products (and again, who hasn't heard bad hype about milk?), as well as beans and nuts, but I don't feel like that's enough protein on its own. I've been strictly gluten-free since Oct 2003, so I should be OK to eat soy right? I might try an experiment though... thanks for the suggestion.

- Lauren

Lauren- If you had a positive biopsy I wouldn't mess with that. we all have wishful thinking sometimes. but then I'll have bad day or a minor reaction and I'll remember why I'm doing this!

As far as soy goes, when I went gluten-free I thought soy was the best thing since sliced bread but after a year and a half (you think I would have gotten a clue before that- I had my suspicions) I realized that soy has almost the same effect on me as gluten with an added twist- it gives me muscle pain through the roof. If going back on a meat diet is not for you, I would definitely eat eggs and dairy and beans and nuts. Would you consider fish or shellfish? Also, someone on here alerted me to the best gluten-free SOY free veggie burgers EVER- Sunshine Organic burgers. They are AWESOME. I'm not a vegetarian but have always preferred veggie burgers and I love them!

You could always try cutting it out for awhile and see how you do. I had no idea how much it was hurting me until I went back over my food journal and realized that the days I had no soy were the dyas I felt the best. When I tried it, the pain came back so I'm done.

Hugs, Beverly

[mama belle]

I'm late getting in on this conversation (and totally new here) but I just got the phone call from my doc yesterday saying my biopsy was positive for Celiac, but my blood tests were negative. My doc confused me a little because he said that there is a small chance that it might not be Celiac since my blood work was negative. I am one of those people who likes definitive answers, I want to know for sure one way or the other. I am scheduled for an appt. in two weeks so maybe he'll give me more info then. In the meantime he wants me to go gluten free. I started the diet this morning and this forum has been uber-helpful with identifying gluten-free foods. My symptoms were cramping, severe bloating, diarrhea, abdom. pain (also especially at night), back pain, fatigue, joint/muscle aches, bad mood.

[AndreaB]

Welcome Mama Belle!

While you are waiting for your appointment check out www.enterolab.com and see what you think. You can print off what you'd like and see if your doctor has heard of them, or find out if insurance would cover any of it. We had enterolab done for the family except my infant son. Their test would be able to tell you whether you are gluten intolerant as well as whether you have malabsorption. They also do a gene test and tests for soy/egg/yeast and dairy. We felt it was worth the money and our whole family is now gluten free as well as soy free.

[mama belle]

Thanks! I will check it out!