Too Scared To Get Tested - Hemophobia

[ZACTAK]

Hey everyone!

My name is Zach, and I live in Missouri. I am going to give you all a little history about what has brought me to this site today. When I was 16, I had severe mood swings and had low blood sugar attacks. I went to the doctor and was diagnosed with hypoglycemia. When I was 20, I slept all the time. I was sleeping 17-20 hours a day, literally. I was diagnosed with depression on the simple fact that I was lethargic and slept a lot. Although my sleeping has improved, it is still a factor. When I am not at school, or working on my days off, I sleep for at least 12 hours. I am always tired and lethargic... On top of all of that, I am a small person. I am 5'9", but I only weigh about 105lbs. I am constantly eating, but I lose weight quicker than I gain it. I continue to have low blood sugar issues and mood swings. In the last few months, I have developed abdominal pain that only seems to appear after I have eaten wheat. I also have diarrhea most of the time that I have a bowel movement. My younger cousin was diagnosed with Celiac Disease when she was younger, and my uncle (dad's brother) has it as well. So it may run in the family.

A month or so ago, I went gluten free, and felt great... with the exception of my sleeping, I had regular bowel movements that were more frequent than what I had before being gluten free, I didn't have any abdominal pain and I felt better all around.

I started eaying gluten again, and all the symptoms of the past are coming back. For two days now, I have had abdominal pain and diarrhea.

I know ya'll won't be able to tell me yes I have it, but you might be able to point me in the right direction. The issue I have with getting tested is that I was diagnosed about a year and a half ago with a specific phobia of blood, and a slight agorophobia due to the phobia of blood. I am so scared to get tested because of my fear, and don't know if I can muster enough confidence to go in and get tested. Any advice for me?

[tarnalberry]

consider whether or not you really need to be tested. if you felt better eliminating gluten, you can make the choice to continue doing that. you do not need the four gluten containing foods - wheat, barley, rye, and oats - to be healthy. nor do you need the test to take them out of your diet.

[ShayFL]

Hi Zac,

I recommend Enterolab which uses stool and saliva. If you have phobia's about those, then you have to convince a Dr. to do a biopsy (no blood) and you will be out when it is performed. But a Dr. will likely want a blood test first.

[Nancym]

Have you ever been to a neurologist? It sounds like you might have narcolepsy.

[ravenwoodglass]

As mentioned you do not need to get anyones anyones permission to eat gluten free. The exclusion you did, and the reoccurance of symptoms when wheat is added back in is diagnostic. Especially with diagnosed celiacs in your family. The need to get any other testing done is up to you.

Gluten is a neurotoxin for some of us. That can lead to depression, or to the symptoms that have gotten you labeled as depressed. It can also affect sleep, both by decreasing the amount folks are able to sleep and by increasing it. We have 4 of us in the family, two sleep a lot on gluten and two don't sleep at all for a couple days after a glutening so the effects on the brain can differ even within the same family. Are you falling asleep while active during the day? For example do you fall asleep in the middle of conversations? Have you fallen asleep while driving? Have you fallen asleep in the middle of an activity? Narcolepsy happens when folks fall asleep while they are awake and doing normal activities, it is not just sleeping in excess or being tired. My feeling is you are sleeping excessively but not having narcoleptic symptoms. If you are falling asleep while active you may want to consult with a neuro, but if you are just sleeping long hours the gluten free diet should help that once you have healed a bit.

One thing that may help you a great deal is to get some sublingual B12, it dissolves under the tongue and is absorbed into the bloodstream bypassing the damaged gut.

You have come to a great place for info and support, read as much as you can here and ask any questions you need to.

[nora-n]

My DD was sleeping like that all the ime ans missed a lot of school. The doctors said that stomach pain in children alsways is nerves and would not test her, but tested her hb and she was anemic. Now in her twenties, still having stomach issuses and after having been admitted to hospital with acute pains some years earlier where they did not find anything (gyn ward), I said try gluten-free and she improved right away.

But she did go through the tests , even gut biopsy awake because she really wanted to. One reason is that she then can have an official diagnosis and noone (friends and family are often the worst) can say it is in her head, and here we get money from the government if diagnoed celiac. Her tests were all negative but she got a diagnosis anyway.

Really depends on how motivated you are.

I would say do an enterolab test first, and the advantage is that they will test for intolerance to milk and soy too.

With me it took seven months off gluten till i awoke one morning to being not so awfully tired.

nora

[ZACTAK]

Hey everyone!

Thank you all for your advice, I definitely appreciate it. I definitely would not be able to do the enterolab.. I would have an extremely hard time completing the stool sample.

In response to whether I have narcolepsy... my mom has narcolepsy, but mine is more of I am just really tired and exhausted through the day, regardless of how much sleep I get... I don't take naps, I don't have trouble falling asleep during regular activities, etc.

[aikiducky]

It sounds to me like really your best realistic option is to just go strictly gluten free. You already know that it makes you feel better, so why not?

Pauliina

[ravenwoodglass]

Hey everyone!

Thank you all for your advice, I definitely appreciate it. I definitely would not be able to do the enterolab.. I would have an extremely hard time completing the stool sample.

In response to whether I have narcolepsy... my mom has narcolepsy, but mine is more of I am just really tired and exhausted through the day, regardless of how much sleep I get... I don't take naps, I don't have trouble falling asleep during regular activities, etc.

The Enterolab tests are not like the ones for food poisoning where you have to 'play with it' and use little scoops and that sort of thing. You basically pooh in a container then throw the lid on it, bag it, freeze and send it. But you already know that gluten is toxic to you so if you can do the diet without an authority telling you to do it then you really know all you need to know.

Do be aware that Celiac is genetic, can you get your Mom to be tested? If she has a number of health issues it would be a good idea. My DH was narcoleptic from celiac, it was so hard to talk to him for years. He finally got tested when we realized that since the kids show up on blood work and I don't that they might have gotten a gene from him also. They did. Long story short he is now the man I married, easy to talk to and he doesn't fall asleep on the drop of a pin. His only GI symptoms were gas but the diet has made a real difference for him mentally.