Question About Symptoms

[maxdad]

Hello:

I am sorry to bother you with what is likely a stupid question. My son Max, age 5, was diagnosed last week, by blood tests. I have been reading about the disease ever since, and I am starting to suspect that I might have it as well. I have various stomach-related symptoms, and doctors have been looking into numerous possibilities for about a year. But there is one thing that I have not seen mentioned as a symptom of celiac that I have as a symptom: I usually feel better if I start eating again. That is, I usually feel nausea about 2 hours after I eat, but if I then eat a a banana or a piece of cheese it goes away for a few hours. Does anyone else have such symptoms? It doesn't seem to make sense with what little I have learned from my reading.

Thanks,

Mitch

[par18]

Hello:

I am sorry to bother you with what is likely a stupid question. My son Max, age 5, was diagnosed last week, by blood tests. I have been reading about the disease ever since, and I am starting to suspect that I might have it as well. I have various stomach-related symptoms, and doctors have been looking into numerous possibilities for about a year. But there is one thing that I have not seen mentioned as a symptom of celiac that I have as a symptom: I usually feel better if I start eating again. That is, I usually feel nausea about 2 hours after I eat, but if I then eat a a banana or a piece of cheese it goes away for a few hours. Does anyone else have such symptoms? It doesn't seem to make sense with what little I have learned from my reading.

Thanks,

Mitch

Is nausea the only thing you notice? Neither cheese or a banana has gluten. Have you tried going gluten free at all. Is your son on the diet now? There are a lot of symptoms associated with Celiac and although I can't remember having nausea I do think that it is a symptom to some. Are all foods giving you nausea or just certain ones?

Tom

[maxdad]

Is nausea the only thing you notice? Neither cheese or a banana has gluten. Have you tried going gluten free at all. Is your son on the diet now? There are a lot of symptoms associated with Celiac and although I can't remember having nausea I do think that it is a symptom to some. Are all foods giving you nausea or just certain ones?

Tom

Hi Tom:

Well, this all came about when he was diagnosed less than a week ago, so he is not on the diet yet (still waiting for his biopsy), and I am not on it either. And I have not tracked what makes me feel ill since this is all so recent, although I did experiment a little bit the last few days and I seem to feel better without gluten. So, for example, Friday and Saturday I had sandwiches for lunch, and within a few hours I was close to vomiting. Today I has just the meat for lunch, and I felt much better. Could all be in my head (in which case it would be very lonely). But until I get blood tests (next week, hopefully) I am going to continue to eat as always. But I wondered if anyone else felt better while eating.

Mitch

[par18]

Hi Tom:

Well, this all came about when he was diagnosed less than a week ago, so he is not on the diet yet (still waiting for his biopsy), and I am not on it either. And I have not tracked what makes me feel ill since this is all so recent, although I did experiment a little bit the last few days and I seem to feel better without gluten. So, for example, Friday and Saturday I had sandwiches for lunch, and within a few hours I was close to vomiting. Today I has just the meat for lunch, and I felt much better. Could all be in my head (in which case it would be very lonely). But until I get blood tests (next week, hopefully) I am going to continue to eat as always. But I wondered if anyone else felt better while eating.

Mitch

Are you are aware that Celiac is genetic? Your son probably has one of the genes if he has Celiac. If so he got it from you or his mother. There is a good chance if he has it than maybe you do too. If it were me I would wait to see what his results are and if positive both of you could go on the diet together. It would good support for him and good practice for you. It cannot hurt you to try the diet. It it seems to work you can then decide what to do next.

Tom

[Lisa]

Mitch:

I can answer for myself and maybe others have similar issues. I tend to "graze" all day. I nibble here and there constantly all day. I do not eat big meals as it makes me feel uncomfortable. It seems to help me.

Perhaps you have excess stomach acid that causes the nausea and the food intake settles you stomach.

If your son has been dx's, I would consider that you may carry the gene and may be pre-disposed as well.

I would suggest that you do some more research and read more of these posts. It will be extremely informative.

Let me also say, that there are no silly questions on this site. We have newbies, a lot of people searching for answers and lots of folks with a vast amount of knowledge......all willing to be helpful.

Feel free to ask away.

Lisa

[happygirl]

I wanted to add to what Lisa said...there is no stupid question. Welcome to the board!

and, this probably won't be much help, but just about any symptom has been related to Celiac/gluten intolerance, so if you have celiac, the nausea could easily be a symptom. I was often nauseous before I was dx'ed, among other delightful symptoms

just remember, that a biopsy can definitively diagnose Celiac, but it can not rule it out. The small intestine is over 22 feet long, and celiac damage can be patchy. So, if by chance it is negative...your doc might say he "doesn't have Celiac" and thats not necessarily true. Many on here were dx'ed only with the bloodwork. Many just went gluten free anyways, without bloodwork or biopsy.

what blood tests were run (there are numerous ones in the panel. sometimes doctors do not run the full panel...if he didn't run all of them ---you can find the list at Open Original Shared Link, from a leading Celiac physician ---- you should ask that he draw more blood to test for it. need to have it done before he goes gluten free). If you decide to have the bloodwork done, make sure that you emphasize that you want the FULL panel done.

Your doctor can also run the genetic testing. Having the gene(s) does not mean that you have Celiac, though. A large portion of the population has the genes (about 30% or so) but 1 in 133 has Celiac...so there is MUCH more at play that Celiac. The identified Celiac genes are HLA-DQ2 and HLA-DQ8. About 97% of dx'ed Celiacs have one or both of these genes.

All this being said....if you or your son feels better without gluten....then go for it! You don't need a dr's note to take something out of your diet On the other hand......it can be much easier to have an official, solid, gold-standard diagnosis.

[Ursa Major]

Hi Mitch, and welcome to this board. As said before, your question is absolutely not stupid, but rather very reasonable. Since celiac disease is genetic, you could well be the one your son inherited it from. And the difference you've felt from being nauseous after eating a full sandwich, and feeling fine with just eating the meat is very telling.

When is your son going to have the biopsy done? You know, testing is very unreliable in children that young, there will be many false negatives (but really, no false positives). I suggest that no matter what, whether the biopsy is positive or negative, you need to try the diet.

I know there are advantages of an official diagnosis, such as others (especially in the extended family, many of us have found) not taking you serious if you self-diagnose. On the other hand, some of the member here have been denied health or life insurance because of an official diagnosis of celiac disease.

The diet is the most valid test there is. If you feel sick while eating gluten, and fine without it, you are obviously gluten intolerant. And nobody can stop you from eliminating gluten from your diet and being gluten-free. It is very healthy to eat that way, NOBODY needs those gluten grains, or any grains, for that matter, to be healthy.

I hope you guys figure it out and get well!

[Rebecca47]

I was reading about the celiac gene on this pages. I understand that there are two genes, I get that, but what does HLA DQ2 and HLA DQ8 mean and is it worse to have one or the other or both. I am going to tell my doctor tomorrow that I want to get gene tested. My mom was tested and my doctor said I did not get it from her. She was so happy. I never new my dad so I didn't know this was in my genes now I want to know what else I can get. Scares the heck out of me.

[par18]

I was reading about the celiac gene on this pages. I understand that there are two genes, I get that, but what does HLA DQ2 and HLA DQ8 mean and is it worse to have one or the other or both. I am going to tell my doctor tomorrow that I want to get gene tested. My mom was tested and my doctor said I did not get it from her. She was so happy. I never new my dad so I didn't know this was in my genes now I want to know what else I can get. Scares the heck out of me.

Rebecca,

I tested positive for Celiac via biopsy in May 05. At that time I had never had a blood test. I did however get follow-up blood test this past summer. I had anit-body test to check progress (it was good, negative) and also a gene test to see which one I had. I had DQ2. Then I thought of how I might have gotten the gene. My father was deceased so I had my mother tested for one reason only. To see if her side of the family was at risk. She did have the same gene. As far as what else you can get let me say that this is the last thing on my mind. I know if I remain on the diet I will being doing all that I can to remain as healthy as possible. My body rewards me by continuing to feel good. I think that genetic testing is important in that it can identify whether or not some family members are at risk but once again it is up the person to act upon this information only if the need arises. Just take a deep breath, listen to your body and continue on the diet and you will be fine. Try to avoid as many "what if" questions as possible. Good luck.

Tom

[daffadilly]

Enterolab and one other lab are the only ones that also test for DQ1

[Sophiekins]

The short answer to your question, Maxdad, is yes. When I was nauseous, I used to eat to stave off nausea - and often my food of choice was gluten-containing like cheerios or crackers. It's worth having you both tested (at least a full blood panel) - and if your son is anything like my nephew, it will be easier for him to have the tests done if Dad does it as well. Good luck.