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Scared & Confused
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(Small intro:

I've been diagnosed Celiac just four months ago, after going through many other crazy diagnoses throughout my childhood. Turns out that where I live they don't know much about Celiac's, and would rather just let a kid think she's gonna die of an unknown cause.

So going off gluten changed my life dramatically, and I'm extremely grateful to G-d for giving me life and energy.)

I live in a small dorm where they serve cafeteria style food. I usually make my own food, but buying gluten-free has been getting quite expensive. I spoke to the principle who in turn spoke to the chef who promised not to put gluten in certain foods, such as the soup.

On Monday I ate some of the chef's soup, but no more than five or six spoons because it tasted nasty. About half an hour after eating it my head began to hurt. At first I thought it was just a small headache from over-working, but then it turned into a full on migraine and I had to run off to bed. I spent that night rolling in bed in pain. I woke up in the morning nauseous and then threw up three times. I thought that now that it was out of my system it would be over, but then I went to the bathroom and found blood rushing out with my stool.

So now it's been two full days and I don't have a full migraine but I'm left with a headache, fatigue, and a large amount of blood every time I go to the bathroom.

Does it make sense to react like this? Even to such a small amount?

I'm scared that there might be something else to it, and that maybe going off gluten wasn't enough. I got tested for dairy and that was ok. So was soy and many other foods I tested for. Or maybe I'm just traumatized and scared for nothing...?

I'm pretty new to this, and so is my family, so if anyone with experience could tell me what they think, it would be greatly appreciated.

Thanks in advance :)

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I personally have never passed any blood after being glutened but I have heard of it happening. It's very possible that the soup could be contaminated even if it doesn't have actual gluten in the ingredients. Stirring with the wrong spoon, using the wrong cutting board, flour in the air, ect. Also it's possible you could be food poisoned. Is anyone else ill at your school? Did anyone else noticed the soup tasted off? At any rate, I would still consider seeing a doctor.

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I'm sorry this happened to you.

I assume that your parents are paying for this school? They need to be all over the principal, food director, anyone else in charge. If they are going to make you pay for the food, they need to provide you with safe food. Leaving flour out of the soup and telling you that is what you can eat, is not providing you with safe food.

This stuff makes me so mad. If they didn't have smoke alarms to keep the students safe, they would be closed down. Poisoning the students should be the same thing.

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You need to see a doctor today to be on the safe side. While some can have bleeding with a glutening it is not a usual symptom and the bleeding is not usually severe. If the bleeding is constant, in other words you are bleeding even when not passing stool, or you are feeling weak and the pain is severe go to the ER.

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Some of that sounds like food poisoning to me--especially the fact that it tasted terrible. I would definitely look into whether anyone else got sick from it.

It was probably CC'd too, judging from how clueless everyone sounds, but still. It could've been both too.

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I personally have never passed any blood after being glutened but I have heard of it happening. It's very possible that the soup could be contaminated even if it doesn't have actual gluten in the ingredients. Stirring with the wrong spoon, using the wrong cutting board, flour in the air, ect. Also it's possible you could be food poisoned. Is anyone else ill at your school? Did anyone else noticed the soup tasted off? At any rate, I would still consider seeing a doctor.

The only other one that is ill is a celiac friend who also had the soup, thought she didn't react nearly as bad...

I decided to just not eat the chef's food. Its not an option to stop paying for it, as it comes in a full package with fruits and veggies and the option to use the kitchen to cook my own food.

Thanks everyone for your response... I guess I'll have to see a doctor, though the one I have here isn't usually that helpful. As of now, I don't think I've lost too much blood, though I've been craving and eating sugar straight...

Is it really that rare to bleed as a reaction? Is it possible that theres something more to it? I've heard of Celiac's being a symptom of something larger... I don't wish for it, but my friend keeps mentioning it...

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Thanks everyone for your response... I guess I'll have to see a doctor, though the one I have here isn't usually that helpful. As of now, I don't think I've lost too much blood, though I've been craving and eating sugar straight...

Is it really that rare to bleed as a reaction? Is it possible that theres something more to it? I've heard of Celiac's being a symptom of something larger... I don't wish for it, but my friend keeps mentioning it...

I do think it is fairly rare and most times I think it is the result of hemmies. I had pretty severe bleeding for about 3 days after a second gluten challenge was demanded by my ex-GI doctor. A good glutening will still cause a small amount of bleeding for me but it is barely noticeable. While it is IMHO not likely that it is something serious it should still be run by the doctor to rule out any possible other issues.

If you have a firm diagnosis from your doctor you should talk to them at your school. Celiac is covered under the ADA and if they can only provide you with limited safe items then you may be able to get a partial refund on your meal plan. Never hurts to check as some schools are very good about that stuff. My DD was put in senior housing her freshman year so she could have her own kitchette and they refunded the full amount of the meal plan.

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I do think it is fairly rare and most times I think it is the result of hemmies. I had pretty severe bleeding for about 3 days after a second gluten challenge was demanded by my ex-GI doctor. A good glutening will still cause a small amount of bleeding for me but it is barely noticeable. While it is IMHO not likely that it is something serious it should still be run by the doctor to rule out any possible other issues.

If you have a firm diagnosis from your doctor you should talk to them at your school. Celiac is covered under the ADA and if they can only provide you with limited safe items then you may be able to get a partial refund on your meal plan. Never hurts to check as some schools are very good about that stuff. My DD was put in senior housing her freshman year so she could have her own kitchette and they refunded the full amount of the meal plan.

When my son was 29, he called me to ask if hemmis could be causing the blood in his stool. He is not celiac. I told him that hemmis could, but that he should DEFINITELY see a doctor. He made an appointment. The bleeding stopped in a few days, before he could see the doctor, and he was going to cancel the appointment. Just like him....he never got around to cancelling. And they did a colonoscopy and discovered colon cancer!!! Early, thank God, and he is now fine and cancer free. In my opinion, any rectal bleeding should be followed up!!!

I also agree that you AND your parents should talk tough to the school. And be sure to mention the ADA a lot! Even the slightest thought that they could be sued will bring miraculous change!

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think about it this way: they poisoned you. Sure, not intentionally, but that's what happened. you have to do something about that. If more people like you stand up for your health, maybe the world will become more celiac-friendly as time goes by...

okay, I'm getting off my soapbox now.

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think about it this way: they poisoned you. Sure, not intentionally, but that's what happened. you have to do something about that. If more people like you stand up for your health, maybe the world will become more celiac-friendly as time goes by...

okay, I'm getting off my soapbox now.

DON'T get off your soapbox, Strawberry!!! We need young'uns like you!!!

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You (and your parents) should look into establishing something formal with the school. My limited knowledge is on an IEP (Individualized Education Plan) that's binding on the school. It's generally used for things like tutors and sometimes special medical needs. Not sure if this is the right vehicle but will hopefully get you started in the right direction. Definitely get a formal agreement with the school and not just discussions with the administration and dining facility staff.

Also, if you have a medical clinic at your school, talk to them immediately. Ask them help advocate for you. They can have more pull at a school that you think.

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Ok, thanks everyone... Right now though, I'm not really thinking of complaining or suing or blaming anyone... maybe after. Now I just want to get better.

Its been almost four days and the bleeding hasn't stopped... I made a gastreo appointment, but I couldn't get one too soon... In the meantime I feel weak and slightly lightheaded...

Has anyone here experienced this before?

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Ok, thanks everyone... Right now though, I'm not really thinking of complaining or suing or blaming anyone... maybe after. Now I just want to get better.

Its been almost four days and the bleeding hasn't stopped... I made a gastreo appointment, but I couldn't get one too soon... In the meantime I feel weak and slightly lightheaded...

Has anyone here experienced this before?

Can you get into see a GP or go to an Urgent Care Clinic where they can see you sooner? It would be a good idea to try and get into one or the other and sometimes if another doctor calls the GI can get you in much sooner.

Feeling weak and lightheaded can be part of a gluten reaction for some of us but with the bleeding you don't want to just assume it is part of the reaction.

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I would suggest getting checked out for Ulcerative Colitis. Bleeding in stools is a common symptom of UC, and UC can be mistaken for Celiacs. Good luck!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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