Seeking Help To Piece Together Motley Symptoms And Conditions

[unless]

Greetings,

I hope this is the right forum; I'm new to this community, as you can tell. Here's my story, and I'll start from the beginning. I've embedded lots of questions and other concerns, and am trying to sort out what's really going on here with my health.

Health-wise, I was normal all throughout my early and middle childhood, excepting for an unusual thinness and high sensitivity to cold. When I turned nineteen years old, I was 5'10" and only 110 lbs (I'll be twenty come November). It isn't so much that I'm lacking body fat only; rather, it's low body fat coupled with a very low muscle mass. When exposed to cool conditions (I'm talking 75 degrees F or less), my nails turn purple and my skin becomes mottled in appearance.

My low body weight and temperature sensitivity are things I have learned to live with, and they don't really bother me much. In fact, nine months ago, I began a relatively intense cardio and weightlifting regimen. I have been very dedicated and persistent in my workouts, but to this day I have gained a mere four pounds of muscle mass. I've tried taking a week off working out, only to find that my gains quickly disappear. So, in short, I've become resigned to being underweight.

I went through a very late puberty (I was around sixteen years old), and today, at nineteen, I am often mistaken for being three years younger or so. I've sometimes been told that my cousin, who is fourteen, looks older than I do. I'm still not sure if I'm finished growing, because something about my development just seems really incomplete.

Over the past three years, beginning around the onset of puberty, I've developed some troubling GI symptoms that have slowly escalated. Finally, early this month, their severity promped me to seek medical help. I'd describe it as back-and-forth constipation and diarrhea, with constipation lasting for about three weeks and then a quick bout of diarrhea lasting a couple of days once the "flood gates" are opened, so to speak. When I'm constipated, I won't go for three or four days, and even then, there is a sense of incompleteness, like there's still a lot backed up in there. Initially, I thought I wasn't drinking enough water or taking in enough dietary fiber, so about six months ago I improved my diet to include several servings of fresh fruits and vegetables, three quarts of water a day, and whole grains. Maybe it was the whole grains--not sure--but my symptoms increased in severity twofold. I now get painful bloating almost daily and very foul-smelling gas every single day. It's a very characteristic odor, almost like there's something rotting or not being properly digested. The gas is embarrassing and so frequent that if it is particularly bad I am unable to go out in public.

Fatigue has also become a big hassle. I feel most tired after eating, usually breakfast and lunch (which also happen to be my most wheat-intensive meals), but there is a general feeling of exhaustion and fuzzy-headedness that lasts all day. I've been having to sleep longer and longer just to feel rested. I would love having the ability to stay awake for sixteen hours and sleep for eight, but I simply can't last that long. I'm usually restricted to twelve to fourteen hours a day, which is quite pathetic. I have to drag myself to the gym most days, and tend to get light-headed and dizzy during workouts. Upon standing, I often feel like I'm going to keel over; I usually have to hold onto something to prevent this from happening. I'm wondering if the fatigue is due more to my hormone shortage or GI problems. Other items on my laundry list of symptoms are persistent acne around my mouth area, which started about three years ago, and frequent headaches, which may or may not be related to anything else.

The first doctor I went to see was an endrocrinologist, this past June, thinking perhaps that my worsening GI problems were just due to changing my diet. What I was more concerned about at that time was my lack of body mass and delayed puberty. After all the test results came back, I was diagnosed with hypogonadotropic hypogonadism and put on synthetic hormones to restore my testosterone levels, which are so low that they are almost comparable to those in females. The problem, apparently, is in my brain: my hypothalamus is not properly stimulating my pituitary gland to produce testosterone precursor hormones. Now, I'm the kind of person who likes to know the underlying cause for a condition instead of just treating the symptoms. I'm wondering why my brain isn't sending those signals. Could it be related to my GI symptoms? So, I had to dig a little deeper.

Once my GI symptoms became intolerable (last month), and suspecting celiac or a gluten intolerance, I had some tests done by my PCP that revealed very elevated levels of IgG and a less elevated IgA. Strangely, though, I had perfectly normal levels of essential B vitamins and other minerals in my system. Could this just be due to my potent multivitamin regimen? I've always taken calcium, a B-complex, and a good multivitamin and mineral supplement. However, I'm confused because I would assume having celiac would impede proper digestion to the point that no matter how many vitamins I'd take, I'd still be malnourished and lacking essential nutrients.

So, my PCP referred me to a gastroenterologist, who scheduled me for an endoscopy of both my colon and small intestine (I'll be having the procedure done early next week). I asked about the possibility of other food intolerances that may cause similar symptoms, including casein, lactose or soy, but he said there is no definitive way of testing for those, and that celiac is far more likely to be the cause of my symptoms. Is casein intolerance really all that common? How do I have any way of knowing whether gluten is my only food intolerance? I don't know if I trust this doctor.

What I'm most wondering is to what extent, if at all, gluten intolerance could be messing with my hormones and energy levels. I was also diagnosed with scoliosis last year, for which I'll soon need surgery to correct two pronounced curves in my spine, and I'm thinking celiac may also be the culprit there too. I just think it's strange how I could develop the intolerance around puberty and not have had the disease from infancy. Or, perhaps I had it all along, but have just in the past three years developed the characteristic GI symptoms? Also, why would I have such severe acne even though I have very low testosterone levels? Heightened testosterone during puberty is usually associated with acne, but my levels are sub-normal. Anybody have acne as one of their celiac symptoms? It's quite unsightly, and I'm the only one in my immediate family with it.

All of these varied medical problems are confusing to me, because I wish I could just pin one cause, like celiac, on all my varied symptoms. It's nice to have a definitive answer to what's going on, instead of just treating the symptoms without ever knowing the underlying cause.

People call me a hypochondriac because of all my so-called ailments. But really, there's no way I'm making all of this stuff up. Do people ever make you doubt that what you're going through is even real? I'm not insane, I swear! That's what I feel like saying oftentimes. How do you cope with this? I don't want to seem like a health fanatic, but all my problems seem to be pushing me toward just that.

Please tell me you can identify with some aspect of what I'm going through. If you need any more information at all, I'd be happy to elucidate.

Also, I'm male, I don't know if I remembered to mention that. And thank you for your attention to reading all of this; sorry it's so long.

[The Fluffy Assassin]

Greetings,

I hope this is the right forum; I'm new to this community, as you can tell. Here's my story, and I'll start from the beginning. I've embedded lots of questions and other concerns, and am trying to sort out what's really going on here with my health.

Health-wise, I was normal all throughout my early and middle childhood, excepting for an unusual thinness and high sensitivity to cold. When I turned nineteen years old, I was 5'10" and only 110 lbs (I'll be twenty come November). It isn't so much that I'm lacking body fat only; rather, it's low body fat coupled with a very low muscle mass. When exposed to cool conditions (I'm talking 75 degrees F or less), my nails turn purple and my skin becomes mottled in appearance.

...

People call me a hypochondriac because of all my so-called ailments. But really, there's no way I'm making all of this stuff up. Do people ever make you doubt that what you're going through is even real? I'm not insane, I swear! That's what I feel like saying oftentimes. How do you cope with this? I don't want to seem like a health fanatic, but all my problems seem to be pushing me toward just that.

Please tell me you can identify with some aspect of what I'm going through. If you need any more information at all, I'd be happy to elucidate...

Let's start by giving a possible name to the temperature sensitivity issue: Raynaud's disease. See if this stuff sounds familiar: Open Original Shared Link

The gastroenterologist is correct that there aren't tests for other intolerances. You'll have to keep a food diary and do a series of elimination diets to see whether other foods are problems for you. However, it's possible that you have food allergies. It might be productive to visit an allergist to be tested for food allergies; celiacs often have several.

Somebody with a better handle on vitamin deficiencies and celiac disease ought to turn up momentarily. One thing I'll note is that if your multivitamins include folate, this could mask a B12 deficiency. (If they do, mention it to the gastroenterologist.)

When I was slightly older than you (and 20 lbs heavier at the same height) a rocket scientist at U. Penn student health diagnosed me with anorexia nervosa, a trendy diagnosis at the time (early '80s) even though I'm male. It took me another 20-odd years to figure out that I might be celiac. So consider yourself ahead of the curve. But yes, I can relate.

Welcome to the board, good luck to you, and I hope you find your answer soon.

Edit: There are a couple of important tests a gastroenterologist can give you, those for fructose or lactose intoloerance or malabsorption. In either case, you undergo a hydrogen breath test, which I understand takes hours. Of the two, fructose is more important to test for, as lactose intolerance can be dealt with just by taking Lactaid.

[elle's mom]

First of all I would just like to say welcome and very well-written bio!

As you can see from my profile, I am also relatively new here, so I am by no means any sort of expert. But I have been reading a LOT and I can say that what you're describing definately warrants at the very least further consideration for celiac disease. I'm glad you're getting tested. I am not diagnosed celiac myself, although my daughter is, and the past year or so with my research, I've developed suspicion that I probably have some sort of gluten sensitivity, if not celiac, myself also. After all, it is genetic. The main part of your history that I can relate to is the acne......never had it at onset of puberty (14 for me), but got it BAD into my twenties, lingering now into my thirties (bummer-FYI-Proactive doesn't help ). I am female so difference there, but I would be curious to hear if others have experienced this also.

As far as the vitamin levels, all I know is that it seems everyone's malabsorption issues seem to be different, there's a lot of variance I guess. Looking forward also to hearing some other opinions on this. Good luck with your quest for diagnosis. If you don't find it I don't think a gluten free diet has ever hurt anyone

[unless]

Alright, so I just had my colonoscopy/endoscopy this morning, and now I am even more confused than I was before the procedure!

Apparently, I have a twisted colon, which may explain my constipation and trapped gas. Instead of having a few turns, my colon twists around several times. This can be conducive to impacted stools and presumably bloating.

Even more interestingly though, my stomach and small intestine "looked good." My gastroenterologist did not note any obvious damage to my small intestine from celiac. I am still waiting on biopsy results (which will be in Thursday), but he said everything appeared fine. He even went so far as to say that I don't really need to follow a gluten-free diet. I don't know if I believe this.

Maybe I'm wrongly convinced, but I really think I have celiac. Why else would I feel so fatigued after eating glutenous meals? And why, then, would my bloodwork come back so indicative of the disease?

Here's the blood work I had done a while back, I would love some help interpreting this:

GLIADIN ANTIBODY (IGA): 14 U/mL

REFERENCE RANGE:

<11 NEGATIVE

11-17 EQUIVOCAL

>17 POSITIVE

GLIADIN ANTIBODY (IGG): 72 U/mL

REFERENCE RANGE:

<11 NEGATIVE

11-17 EQUIVOCAL

>17 POSITIVE

Do I need to ask for more specific blood tests? How indicative are these results of the disease? Could another bowel condition possibly result in these antibody levels, other than celiac? The twisted colon thing has me confounded.

So many questions!

Thanks for the advice! I will probably ask my GI doctor to refer me to an allergist if we can't get to the bottom of this soon.

Until I get my biopsy results on Thursday, I'm going gluten-free in the meantime, just to be safe.

Thanks in advance for your attention.

[unless]

Anybody? Still looking for advice on test results!

Thanks!

[ang1e0251]

I am no expert on blood tests but this might help you.

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

[tarnalberry]

GLIADIN ANTIBODY (IGA): 14 U/mL

REFERENCE RANGE:

<11 NEGATIVE

11-17 EQUIVOCAL

>17 POSITIVE

GLIADIN ANTIBODY (IGG): 72 U/mL

REFERENCE RANGE:

<11 NEGATIVE

11-17 EQUIVOCAL

>17 POSITIVE

The IgA test came back with an "inconclusive" (can't say yes, can't say no) according to their reference ranges. The IgG test came back with a positive. Given that you didn't have a total IgA test, in order to determine if you are generally IgA deficient, the IgA test is kinda useless (because it has no context).

I can't see how a competent doctor would say "no, you don't have it" based on those tests, but I am not a doctor...