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So Sick I Need Help!

bonnie blue

By bonnie blue
in Coping with Celiac Disease

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bonnie blue Explorer
bonnie blue
Posted

Hello friends,

This will be a long post so please forgive me. I was diagnosed in September of 2010, and since have followed a gluten-free and dairy free diet. It took a few weeks but I really started feeling so good. Then in the beginning of December the diarrhea came back, fatigue, dizziness,low blood pressure, and pain on my left side. I found a good GI doc 50 miles from us and he did a colonoscopy, endoscopy, small bowel series, and alot of blood work. He came back and said that it did look like I was benefiting from the gluten-free diet, however I had severe gastritis, so he prescribed Omeprazole for that. I need to mention at this point my weight loss was at 58 lbs. He then sent me to an endocronologist to be tested for other problems. So off we went to the big city 100 miles away (it took awhile to get into her) so by then my weight loss was at 73 lbs. She checked me over, took 6 viles of blood and said to wait for an answer. So the answer was that she found nothing but wanted further blood tests. She is working with my regular MD here and they keep talking to me about depression and even wanted to put me on a med for schizoprhenia (sp). As I type this I am crying, I am not crazy but everyday I get weaker and more scared, my husband is so angry at this point he doesn't know what to do. I look in the mirror and don't even recognize myself anymore. I don't sleep good anymore because it hurts more when I lay down, and eating, well my husband does his best, he steams me veggies and I do try to eat meat but usually just makes me sick.

I will tell you I have been hospitalized twice for low blood pressure, low heart rate, and fatigue. I dont know what to do anymore, I need some help and figured this was the best place to start as the doctors here just think I am depressed. Please any advice would be helpful.

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GabbyB Newbie
GabbyB
Posted

Dear Friend, One piece of advice I can give to you is to say, "don't give up!". Don't let them tell you "it's probably just depression" and not look further (if that was the case). I have been around the health care business for a very long time, and know for sure that the health care system is not known for always taking patients seriously when they have persistent problems. I know there are wonderful, caring and thorough health care providers out there, but I also know that a lot of diagnoses are missed when the symptoms are subjective and the patient has a lot of different manifestations of a particular problem- such as is seen with Celiac disease.

So, calm down, take a deep breath and start "logging" everything that is happening. One thing is to focus on the starting point of your diagnosis, and be specific in logging your weight (example:from what date to what date did the loss occur), your symptoms and any "changes" that might have occurred, AND your food intake, including your calorie count. You can do this.. there are lots of tools on the web that will help you. But,you need to get some real data to show your MD. For instance, did you perhaps eat foods, or introduce new products into your house, etc.? Did you eat out some place that you felt was safe, but might not have been? Celiac disease can truly affect you in a lot of ways, and it can be triggered to give more symptoms in ways you may not suspect. So, LOG daily- your diet, your weight and your symptoms. If you are only taking in 1000 calories a day and you encounter gluten in an unknown source, you wouldn't even be getting the benefit of that low calorie count, so of course you would lose weight. You need to have specific information to show the MD so that he/she can analyze changes more accurately. Sometimes they just don't ask the right questions to know how to relate the problems a patient is experiencing to the real culprit. (example, not enough calories AND gluten exposure would of course be a significant problem).

But, if you decide to seek another opinion, make sure that you go to a different practice and different MD if you want to do that. Partners in the same group have been known to not oppose a diagnosis of another member of their group- even if the specialty is different (example- Internal Medicine says one thing- and the consult is with a Gastroenterologist in the same group). Of course I know your insurance coverage will be a big factor, but try to get all your facts together prior to changing doctors as well- if that is an option). Just another tip.. you have the right to have the results of all your tests explained to you. Insist that you get that.

Finally, I would say that depression is normal, to some degree, with anyone who is diagnosed with Celiac disease and is trying to cope with all the restrictions, explanations, and generally lack of understanding that is encountered from others around you. But, depression should be managed and treated- As it IS a real diagnosis and is treatable!- it just shouldn't be the diagnosis dumping ground for any new problems that occur. New problems (such as a profound, continued weight loss and NEW symptoms) should not be ignored. So, make sure that you understand the final diagnosis and treatment plan, and make sure that you are taken seriously and have had your treatment plan explained to you. AND, be sure that you know exactly what to do to make yourself a true partner in your health. This website (which I just discovered while trying to find ways to help a family member who was just diagnosed) seems to be a great place to get not only good information, but also good support. Good luck and take care :) (See, you're not the only one who had a "long" post!)

Hello friends,

This will be a long post so please forgive me. I was diagnosed in September of 2010, and since have followed a gluten-free and dairy free diet. It took a few weeks but I really started feeling so good. Then in the beginning of December the diarrhea came back, fatigue, dizziness,low blood pressure, and pain on my left side. I found a good GI doc 50 miles from us and he did a colonoscopy, endoscopy, small bowel series, and alot of blood work. He came back and said that it did look like I was benefiting from the gluten-free diet, however I had severe gastritis, so he prescribed Omeprazole for that. I need to mention at this point my weight loss was at 58 lbs. He then sent me to an endocronologist to be tested for other problems. So off we went to the big city 100 miles away (it took awhile to get into her) so by then my weight loss was at 73 lbs. She checked me over, took 6 viles of blood and said to wait for an answer. So the answer was that she found nothing but wanted further blood tests. She is working with my regular MD here and they keep talking to me about depression and even wanted to put me on a med for schizoprhenia (sp). As I type this I am crying, I am not crazy but everyday I get weaker and more scared, my husband is so angry at this point he doesn't know what to do. I look in the mirror and don't even recognize myself anymore. I don't sleep good anymore because it hurts more when I lay down, and eating, well my husband does his best, he steams me veggies and I do try to eat meat but usually just makes me sick.

I will tell you I have been hospitalized twice for low blood pressure, low heart rate, and fatigue. I dont know what to do anymore, I need some help and figured this was the best place to start as the doctors here just think I am depressed. Please any advice would be helpful.

ravenwoodglass Mentor
ravenwoodglass
Posted

I am so sorry you are going through this. Do make sure that any meds they are giving you are gluten free. What are you eating? Is it being cooked in pans that you changed out after you were diagnosed? You got some good advice from the previous poster so I don't have a lot to add. Don't give up and don't let them try to tell you it is 'all in your head'. If it is not a psychiatrist that is trying to tell you that you are schitzophrenic then insist that you be referred to one before taking meds for something that you may not have. Doctors are way to quick to prescribe psychotropic drugs when we actually have a physical problem that they just haven't diagnosed.

Dixiebell Contributor
Dixiebell
Posted

I'm so sorry that you are having to go through this.

Think about what may have changed. Before this started happening did you start taking any new meds or supplements? Are you the only one gluten-free in your house? Are you still cooking gluten foods? Do you have your own cookware or replace old scratched cookware and utensils and toaster? Are you eating a lot of processed gluten-free foods? Are your hair and skin care products gluten-free? Does your husband eat gluten, you can get CC from kissing him.

There are some recent posts about thyroid problems, might be something to look into also.

I hope for you that you can get this figured out and get to feeling better.

diane64 Apprentice
diane64
Posted

I am new to all of this too, so I don't have any advice. I do want to tell you that this forum is very supportive and helpful! Hang in there! Get second and third opinions, if need be!

Good luck!

Diane

WesternAustralian Newbie
WesternAustralian
Posted

I feel your pain. I have been in and out of doctor's offices, doing blood tests, MRI and CT scans. First they said it is Sjogrens Syndrome. I was in so much pain. Finally they said "Oh, we think you are allergic to gluten"

I have changed my diet completely , ( not easy having a not very supportive husband) and started Yoga as relaxation. I have been to a Naturopath and she has been very helpful.

Hang in there, you will feel better soon.

AZGirl Rookie
AZGirl
Posted

I'm so sorry that you are dealing with the pain and mental anguish. You and I became gluten free about the same time, so I have no real advice to offer. I just want you to know that we all know how it feels to be told...."everything came back normal; there's nothing more we can do for you right now."

Please hang in there; get help for depression if you need it, Lord knows we're entitled to it.

I am going to start asking for copies of all my test results from now on,so I can do my own research if need be. I'm sorry I'm rambling a bit... :)

I just wanted to offer you my best wishes.

Keep us posted on your progress.

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bonnie blue Explorer
bonnie blue
Posted
  • Author

Thank you for your advice and support. The idea of the daily log is a wonderful idea and I have started that, sometimes it is hard to remember everything, but my wonderful husband is there to help me. I have also decided that it is time to let them know that I do want copies of these tests results, so I know exactly what is going on instead of the standard answer of "everything looks good".

Also my home is very safe, I have my own cookware, utensils, and as sick as I have been my family is absolutely amazing about doing everything to make sure there is no CC. I do have a teenage daughter still at home who does still eat gluten but everything is kept seperate, that wonderful girl takes good care of her mom. My husband is my rock, he has been there every step of the way, taking such good care of me. In fact on my really bad nights he never leaves my side, I know he doesnt sleep very good but when I look to my side he is always there. You know I cant tell you how much everyone on this site means to me, so I am sending you all out and big hug and thank you. I go back to the Doctor on Friday, and I will be ready with some info I have been finding on the internet and armed with my daily log, it is time to take charge of my illness and not let them undermine my symptoms. Thanks again everyone.

T.H. Community Regular
T.H.
Posted

Have they ever checked your gall bladder? I know that it can cause trouble for some celiacs, and as I recall, digestion of fats (like from meat) can really do a number on you when your gall bladder isn't working right. I was just noticing that you couldn't eat meats and sparked a memory there.

Also, for meats - do you have any antibiotic issues? I have allergies to antibiotics, and when I went gluten free, I started reacting more to my allergies, including those. At this point, if meat has antibiotic residue, it makes me very sick, and they almost all do!

Another thing that might help in your log is to keep track of companies, brands, farms, etc... for your food.

A lot of people I know who react a few products/contaminants that are in many foods started out feeling like they were reacting to everything around them. Instead, it would be something like high sensitivity to soy, gluten, etc... that was in everything from the soaps washing their produce on the farm to the harvesting equipment used on their food. Even meat has bleach and citric acid (which can be corn contaminated) used to wash it before it gets to the store (some seafood doesn't if it's flash frozen on the boat). If you try some foods from different farms, or call farms up and find out what fertilizer, pesticide, sprays, etc... they are using, it can help you narrow things down.

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