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amoobaa

My Boyfriend A Celiac?

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Hi everyone, I've been reading all the posts here, but haven't been able to join in because i was having problems trying to register.. anyway, finally i've managed to join and i thought i would start by describing my boyfriend Sean.

I think he has celiac disease, obviously i can't tell properly myself, but i think it's worth him being tested.

I spoke to him about it and he rekons i could be right. We are both 21 by the way and live together in a flat in London.

For a long time now (several months) he has been complaining of a tightness in his chest and bad stomach pains, he is always struggling to put on weight, and often looks a bit ill- this really gets him down, as he tries to eat lots but it never makes a difference.

Recently he has woken up suddenly feeling as if he is overheating and has a bad feeling of needing to be sick, his stomach hurts so much that he shaked uncontrollably, it's really scary.

Then it happened a couple of weeks ago again and he had a rash over him so i called 999, because he was shaking and crying on the bathroom floor. They took him to hospital and said he probably had a virus, then let him go as he felt better.

He gets bad stomach pains all the time and sometimes mentions diarrhea. When he was younger he remembers being told he had a wheat and yeast allergy from a hair strand test his mum did.

But we think it could be more than that.

I'm starting to get really upset for him because nobody should have to feel like this all the time.

He ate gluten free for a few days and felt REALLY hungry all the time and was irritable and depressed. He has started eating gluten again because we realised that he needs to eat it until he gets a proper diagnosis, or else the results could be falesly negative (if he has got celiac disease)

Could anybody tell me if it sounds like he has got it? Could this just be an intolerance? or does it sound like more?

We have bought two home tests online (from the link on this website) and we'll see how they come out.

Everything is terrible at the moment because my budgie who i love soo much is ill and my poor boyfriend, who is also my bestest friend in the whole world is ill.. i just don't know what to do.. plus we both have tons of uni work to do.

If Sean does have celiac disease i'll happily go entirely gluten free with him, i just want to know either way!

He's worried about having to have a blood test (he's really worried about having blood taken) and other things or tests, can anyone else tell me about their experiences?

-Abi

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He's right that he needs to keep eating gluten if he wants to pursue traditional testing.

Gluten is very addicting to celiacs so his irritability when going off gluten is likely to be withdrawal. It certainly sounds like his symptoms could be gluten-related, especially with the wheat allergy as a kid.

I had a negative blood test after being gluten-free for two weeks and didn't want to go back on gluten. I felt good enough off it to never want to eat the stuff again so my experience with testing isn't that great. There's plenty of people here who will have better advise in that area.

Good luck! Your boyfriend is lucky to have you.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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It sounds very much like celiac disease, but you are on the right track ordering the tests!

Best of luck, has he been to a gastroenterologist. There are medicines that they can give him for all his intestinal problems. I have one for nausea, one for intestinal spasms, one for anxiety, and one to help me digest food better (it is similar to Motilium which I believe you have over there in Europe).

Hope the tests give him some relief, but if not keep persisting with doctors!


10-06 Diagnosed Urinary Tract Infection (Allergic to Cipro, Bactrim, Macrobid, Doxycycline, Monocycline, Penicillin) - This UTI is still present with no symptoms.

10-06 Diagnosed "Acid Reflux" (Nexium didn't work)

12-06 Endoscopy diagnosed Gastritis (Negative Bioposy)

12-06 Negative bloodwork for Celiac Disease, Diagnosed "Gastroparesis" - Started Zelnorm

1-07 Diagnosed "IBS-C" - Still taking Zelnorm

3-07 HIDA scan to check gallbladder which was fully functional.

3-07 Zelnorm taken off market, started Domperidone

4-21-07 Emergency Appendectomy (FUUUNN!)

7-24-07 Enterolab results came back positive

Gluten Free since that night....

...Still not feeling great.

"Don't expect constant success, but strive for constant growth."

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hey to both of you :)

Thank you so much for replying! I will let him know everything you've said. I've noticed his symptoms kinda coming back since he's been eating the gluten again.

I just really hope the tests arrive soon, so we know either way..

Thank you so much again!

-Abi

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Hey Abi -

I sympathize - hope your Sean figures out what's ailing him. It's good of you to push him to do the right things. Gluten can indeed be the enemy.

I want to mention another long shot...you mentioned that your budgie is sick. When I was a child, I had a parakeet (budgie) and it became sick. I got very sick with GI problems (including bleeding - ack!) around the same time, but we didn't connect the two things. The bird died, and a smart pediatrician recognized that I might be sick with campylobacter gastroenteritis, a bacterial infection that I evidently caught from the bird. I had to take a big antibiotic pill - I think it was EES (erythromycin) to get over it.

If Sean has always been sick (prior to bird), I wouldn't worry about it. But if it's possible the bird infected him, you should read the link and mention the sick bird to Sean's GP.

http://www.betterhealth.vic.gov.au/bhcv2/b...er?OpenDocument

April

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I wanted to add a couple of things...

About fear of blood tests - if he's not used to having his blood drawn, it's natural to be a little scared, but it's really no big deal. I just took my three-year-old for one yesterday. He was frightened, but he laughed a little bit after it was done because he was relieved that it wasn't very painful.

If they do it like they do here in the U.S., here's what might happen. They do the whole thing very fast before you have too much time to think about it. He'll be asked to sit in a chair that has a little place for his arm to rest, kind of like an old fashioned school chair desk. She'll pick an arm - say Left - and he'll roll up his sleeve, and the nurse might tie a little elastic band around his left upper arm. This feels tight but is in no way painful. She'll prepare the vials, and clean the crook of his arm with an alcohol swab. This will all happen very quickly. She may ask him to make a fist with his opposite (right) arm and put it under his left arm to prop up the area (I have had blood drawn many times, and I actually prefer to do this little propping exercise, as it gives me something to do with my other hand and makes the whole thing feel steady.) She may also ask him to temporarily to make a tight fist with his left hand - that helps raise the veins up where she can identify them more easily (a good thing). She may tap on the veins in his arm for just a second to feel where they are.

I always look away about this time, because I feel it less if I don't see it. Also, I look away because I don't want to accidentally flinch. She'll do the needle stick with a very fine needle, and it won't hurt much at all - the moment of insertion feels like being pinched by a small child's fingernails - no worse than that. Sometimes if they're really good, you don't even feel a pinch. I usually look once they have the needle in, because that little pinch is the only part that hurts at all. It takes a few seconds for the vial to fill up (the needle is still in but you can't really feel it), but it never bothers me to watch this part. Once she has the needle in, she'll remove the elastic band from his arm so that his blood circulates freely again. If he is making a fist with his left hand, he will be asked to relax it at that time.

Then the nurse then places a cotton puff over the place where the needle is in, and puts light pressure on your arm and removes the needle quickly. That part is no big deal. The cotton is there to keep the area clean. Typically they leave the cotton in place and put a band-aid right over it.

About not having any energy on the gluten-free diet:

Some people have a temporary reaction that's like a withdrawal. If it's that, it will get better.

Other folks make the mistake of dropping the gluten but not replacing the carbs. Gluten-free does not mean carb-free or starch-free. remember to replace your gluten-y foods with other foods high in carbohydrates to keep energy up throughout the day. If you are typical 21-year-olds, you might be eating out of a box frequently or eating a lot of take-out. Rule #1 is to learn to make two or three meals that are safe and easy. Baked potatoes are your friend! No dishes to wash - just poke holes with a fork and cook for 1 hour (or a little longer, till they give when you squeeze them) in a hot oven (400 degrees Fahrenheit) and you're done. Also, rice is good for a lot of Celiacs (as long as it isn't a rice mix that contains gluten.) If Sean isn't a cook, and you need quick and easy ideas, just let us know and we'll be glad to help.

April

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His symptoms sound very similar to mine. I would awaken with violent abdominal pain and nausea. I would vomit and then have an intense all over body itch. This did not happen every day.

I noticed that the really violent morning reactions occurred when I ate whole wheat. I seemed to be able to tolerate processed wheat much better. If I had whole wheat bread, crackers, or shredded wheat cereal, I would have the violent reaction the next morning. White bread and pastas just seemed to cause the diarrhea and reflux.

When I first went gluten free I was hungry all the time. I felt like I wasn't going to be able to do this diet because of the persistant hunger, but relief from the pain, vomitting and diarrhea was almost immediate. The hunger went away after a few weeks.

I had off and on moodiness and depression for a few months, but now that is gone as well. I just feel so much better now.

Maybe he could find which wheat items cause him the worse reaction and just avoid those for now.

I hope he can get diagnosed soon.


Positive Bloodwork January 2007

Positive Biopsy Feb. 2007

Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

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hey :)

thank you so much for the replies :D

About the budgie- i did think of that, because i have heard of the diseases that can be spread to humans- i'll definitely keep that in mind.. although we're pretty sure my budgie just has pnemonia and enlarged liver :(

Anyway, thank you all so much for the help and advice. I have been to a health food store thathas a massive range of gluten free stuff, looks really nice.. and they printed me out a fact sheet for celiacs.. they also had a student nutritionalist (spelling!?) who was really nice.

The more i think about this, the more i'm sure that he has it. I can't remember whether i mentioned this but when he had the really bad pains and sickness in the night, when i called for help and he was taken to hospital.. he actually had developed a rash over his thighs and parts of his body.. he also has weak tooth enamel (sorry if i already mentioned that too!) anyway.. i literally cannot wait till the tests come through and i will post the results as soon as we get them.

Also about the blood tests, i'll drag him there if the home tests says he has it, and get all the official blood work etc done.. i have had MILLIONS myself as i have had problem with my blood, so i know it's not that bad- it's mind over matter- i think he's letting himself get wound up about it. Anyway, either way i'm going to keep trying to help him.

Thanks so much to everyone again :) I will re read everything you have all said and pass it on to Sean-

Thanks, -Abi

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