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Can't See A Doctor. What Do I Have?
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Hey guys,

 

So to make a long story short, I tested inconclusive for celiac as a kid but suspect I may have it now. I'm male and 21 years old. Prior to the last few months, I would eat tons of gluten and only have symptoms once a month or so, which included very painful intestinal spasms/inflammation (or what feels like it, I'm actually not sure) and "D" that came in waves and lasted anywhere from 1-3 hours. Starting at the end of March symptoms got much worse. I started to have these attacks every week, sometimes twice/week. I began to loose weight, miss class, etc. My Mom has these EXACT same symptoms. Once she stopped gluten, they got much better (but still didn't go away). So, last month I deciced to completely stop eating gluten and lo and behold my symptoms got much better. I've only had one minor attack since I stopped. Initially after I stopped, my intestines still felt uneasy all the time, however after treatment with probiotics they began to feel a bit better. Now I'm doing alright, much better than before, however I'm anxious about another stomach ache hitting me.

 

My "celiac" has quite a few anomolies: First of all, eating gluten doesn't automatically give me problems. Cutting out gluten just reduced the frequency of them. There is no direct cause and effect relationship between gluten and what I'm experiencing. Secondly, some gluten free products give me the same symptoms that gluten does, for example Udi's bagels (but Glutino bagels are fine). My symptoms are an anomolie, there is no direct link to any food, life event, or environment that triggers them. They're completely random, and it's frustrating the heck out of me. Going gluten free is the only thing that has impacted it.

 

Here's the kicker though: I can't see any Physicians, GI doctors, etc. about this or get any prescription drugs. I'm a civilian helicopter pilot and will be applying for military pilot slots after I graduate from college. Anything on my record about celiac, stomach problems, etc. will automatically disqualify me. I'm not going to get desked over my weak stomach. My symptoms must be managed quietly with OTC meds, alternative medicine, and/or diet changes.

 

Which lead me to my question: any idea what I have? If so any other tips for managing it? What can I take for the pain? Immodium, Pepto, etc. do nothing for my symptoms.

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Have you had other things tested? This was how my friends Crohns started. Just an idea.

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If youre not willing to have any tests done, then you could only hope a dietchange will do the trick. How long have you been gluten free for?

You could start by eliminating a nuber of things, like gluten, wheat starch, eggs, soy, dairy (most celiac patients are lactose intolerant untill their gutt has heald compleatly), nuts, fish, yeast. If this doesent help after 3-4 months then thats not the problem. If it helps, then you can start reintrodusing the foods, one at the time. If any makes you ill then you stay away from it, the ones that doesen't make you ill are fine.

 

You could have celiac or any nuber of intolrase to foods, or something else entirely. As long as you won't seek medical help, you're left guessing and trying, but you still might get it right.

Good luck! I hope the answer for you is in your diet, and that your not somehow sick and don't find out till it's to late...

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Won't it be hard to eat gluten-free in the military?  MREs seem to have a lot of the calories coming from gluten.

 

Something to think about: I would worry that you might not be feeling as good as possible while in dangerous situations.  People's lives may be depending on you.

 

If you have Celiac and are eating some gluten, it will get worse as the months and years go by, not better.

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Or diverticulitis comes to mind... Also diet change

Nothing with nuts or seeds like strawberries

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If youre not willing to have any tests done, then you could only hope a dietchange will do the trick. How long have you been gluten free for?

You could start by eliminating a nuber of things, like gluten, wheat starch, eggs, soy, dairy (most celiac patients are lactose intolerant untill their gutt has heald compleatly), nuts, fish, yeast. If this doesent help after 3-4 months then thats not the problem. If it helps, then you can start reintrodusing the foods, one at the time. If any makes you ill then you stay away from it, the ones that doesen't make you ill are fine.

 

You could have celiac or any nuber of intolrase to foods, or something else entirely. As long as you won't seek medical help, you're left guessing and trying, but you still might get it right.

Good luck! I hope the answer for you is in your diet, and that your not somehow sick and don't find out till it's to late...

 

Hopefully it's nothing too serious. I've had it since I was born and it hasn't killed me yet. Like I said, it's gotten much better after cutting gluten a month ago but has not gone away entirely. My impression of celiac was 100% better forever as long as you don't eat gluten, but I don't know much about this so I could be wrong. I'd say I'm 80% better since cutting it out. I was also under the impression that celiac was "eat gluten -> get sick", where I'm not really like that. I'd had plenty of gluten and been fine for days. There is simply a correlation between gluten and symptoms and a history of gluten intolerance in my family, but no direct link. I'm just wondering if anyone else has had similar experiences with what I've described and how they manage it. I guess I'm waiting for someone to say "Yea, I had that exact same thing. All you have is a Vitamin XYZ deficiency. Take these vitamins and you'll be 100% in no time."

 

Won't it be hard to eat gluten-free in the military?  MREs seem to have a lot of the calories coming from gluten.

 

Something to think about: I would worry that you might not be feeling as good as possible while in dangerous situations.  People's lives may be depending on you.

 

If you have Celiac and are eating some gluten, it will get worse as the months and years go by, not better.

 

The image of a infantry soldier in a fox hole with nothing to eat but an MRE generally does not hold true to the aviation side of the military. I've spoken to a few friends who are currently flying for the Air Force and they said it wouldn't be much of a problem. I've been flying for two years now and can function well under stress, stomach ache or not, so I'm really not too worried about that.

Edited by jimhalpert625
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To recover compleatly after going gluten free when you have celiac can take as much as 1-2 years. So if you feel 80% better after a month of being gluten free I would say you are on to something.

Often people with celiac will lack vit. b12, magnesium and iron, also a good dose of multivits, omega 3 and probiotics will help you recover and heal.

I order stuff like this from iHerb.com, they have grate products and prices. The also have something called Celiac Support (just search for it) that is suposed to help. I have just orderd that for my self a few days ago, but not tried it yet, so don't know if it works.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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