Not Sure How To Proceed

[lkautismmom]

Hi. I have been seeing a GI for about a year. I was originally sent to her due to a liver issue showing up during a cat scan for pneumonia... I was diagnosed with ibs in college some 14 years ago, but never sent to a GI. In '06 I had an endoscopy and colonoscopy due to some bowel adhesions to an ovary. They said all was fine, but not really sure if they even did a biopsy at that time. Fast forward to today, I am in a state of confusion. Getting nowhere with my GI back in February, I took matters into my own hands and did an elimination diet for two weeks from gluten. My son has autism and is gluten free due to inflammatory bowel disease. I knew how to eat gluten free as I have been eyeing his diet like a hawk the past 6 years. The symptoms went away during this time (diarrhea, constipation, bloating, gas, heartburn). Two other issues also went away during this time frame...which surprised me, of a racing heart and tightness of chest that usually occurred after eating; and asthma attacks. (Cardiologist had cleared me of heart issues, they felt it was stress...that only occurred after eating). After the 2 weeks, I reintroduced gluten, and not only did the gastro symptoms come back, but so did the weird heart racing episodes. I stopped again for a few days, and tried again and the symptoms again returned.

I have since been not 100% gluten free. If I eat it in very low amounts the symptoms are manageable, but if I eat it more than one meal per day... I am having to use my inhaler for asthma and my gastro issues are all over the place. I also did see some relief from Fibromyalgia during the elimination period, but it didn't completely disappear. Also, I had more energy it seemed off gluten, but I was eating a bit more fruit, so that could be why?

At my GI appt Friday to discuss my latest liver results, I shared all of this with the GI. She immediately set off on a course of ordering bloodwork for celiac and wants me to get an endoscopy done... I will get the bloodwork completed this week at some point, but I cannot afford the endoscopy right now. I feel like I am spinning and cannot make my brain hush to sort it all out. I also don't respond well to anesthesia, I have trouble waking back up, and it scares me to have something done that would possibly harm me in that way...if I could financially afford the procedure.

A payment plan was offered, but she also said the cost can increase if they see something and do pathology, etc.

I just really needed to put all that out there, as no one seems to know how scary this all is to me....

I deal with tough decisions on a daily basis for my son...but when it comes to myself I feel lost.

Oh, and also, a last note... I am 65 lbs over weight... All I have read says weight loss occurs with celiac... Not obesity? (Emotional eater).

Thank you for "listening".

[mushroom]

Hi Ikautismmom, and welcome to the board. It is pretty clear from this side of the fence that you have some serious gluten issues too. I would probably expect your blood work to come back positive. Whether or not you have the confirming biopsy is up to you -- nobody can force you to have it. With a son with gluten issues and the symptoms you have, a diagnosis should follow quite naturally. Although there are some physicians who still demand the endoscopy for a positive diagnosis. This, however, is not something that should alarm you. It is performed not under anesthesia, but under sedation, with an additional drug administered that makes you forget it ever happened. You wake right up from it and do not go through the post-anesthesia recovery. However, someone still needs to drive you home. It is a very routine procedure and probably the only consequences will be a slightly sore throat the next day. Nothing to cause any alarm. But they do NEED to do biopsies since celiac cannot generally be seen with the naked eye unless it is very advanced. This will increase your cost as it is important that they take enough samples that they don't miss the damaged areas.

But again, it is between you and your doctor. If she will not give you the diagnosis without the endo then you are between a rock and a hard place financially. If it is of any encouragement to you, there are just as many celiacs who gain weight because of gluten as those who lose weight and become extremely skinny - most doctors do not know this

Good luck on your blood test results and the outcome with your GI.

[lkautismmom]

Thank you. All this is so big to wrap my head and emotional space around. My internal instinct is telling me I have known there is a problem for a while, but part of me is telling it to shut up, don't want to hear it.

Looking back, if this is celiac, I know the trigger. The year I was tremendously ill at college...I was working in a very stressful job, and all the gastro symptoms started. After I gave birth, symptoms kind of morphed a bit...changed around, and new issues started.

This is just too big. How do I accept it if that is what it is?

My mom would say not to worry about tomorrow... Easy to say that.

I am not typically this depressing, I promise

[Takala]

You are lucky if this is what it is. It is the only auto immune disease whose symptoms can be controlled by just changing your diet to what your body was designed to eat.

Now, keep in mind that antibodies to gluten protein is messing with your brain right now, including it influencing the feeling of "I cannot handle this." Once off of gluten completely, after a time (it varies) you will not have that gluten reaction making you have trouble thinking in a rationale manner.

I was not thin past high school, and I'm average height but can carry much more weight than I appear to have because of bone and muscle, so I was never taken seriously on this subject either, because they want to see a scrawny, wasting away person with gastro symptoms, and instead I had neurological ones. I initially lost weight on the gluten free diet, but as my gut healed up I gained some, especially after age 50. That's okay, at what a height - weight Body Mass Index chart would claim is the normal weight for my height, I would look scrawny. I was shopping last year at a sporting goods store and was in the men's section looking for a sunblocking lightweight long sleeved shirt, and the sales clerk said, "oh, you have kayaker's arms" I suspect my thyroid is slowly going, because my weight for what I am eating really should be lower than this, and my mother's went, but I'm not testing that way. Yet.

I also don't throw normal test results, I self diagnosed after doing a great deal of research, doing an elimination diet with a good response, and I finally got a brain scan showing damage as bright spots. (neurologist was not cooperative.)

I could also get a genetic test, but.... maybe later. It seems that I am descended from all the correct ethnic groups to have a high probability of celiac, and I am likely a third generation person with wheat issues from the symptoms of grandparents on both sides of the family tree.... and the neurological symptoms people with gluten ataxia, like me, are more likely to have the non classic genes.

You should not worry about the endoscopy, until you have a complete celiac blood panel run, anyway. Even so, it is still possible to be negative on one or both phases and still be very sick from eating gluten. That is when you have to go with your own observations of how you respond to a gluten free diet. The one thing you would need to ask yourself now is, would you have the will to stick to it if you skip the endoscopy, because I see a fair number of people coming back here months or sometimes even years later, with doubts, and then they go to a new doctor who puts them back on gluten for too short a time, then retests them, and announces they are not celiac, because their tests results came out negative. Then they (patients) know that they will never get a "real" diagnosis, but they are conflicted because they can tell they are making themselves sick on gluten, but they keep trying to eat it, then stop, in cycles. Meanwhile their coworkers, friends, and relatives don't think that they have a real gluten problem. This sort of sets them up for feeling conflicted.