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Undiagnosed Symptoms Community
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Avatar universal

Undiagnosed (Autoimmune? Food? Inflammation?) Issues

I am a 21 year old woman struggling with steadily declining health. I have struggled with chronic stomach pain and constipation, restless leg syndrome, vulvodynia and asthma since early childhood. Rosacea, severe depression and anxiety, fatigue, brain fog (derealization/depersonalization), hypothyroidism, facial pain, and sporadic but managable muscle pain since early /mid teens. I have bruised at the drop of a hat and struggled with being overweight since I was young, and have chronic lower right quadrant pain in my abdomen that flares up strongly when I do most forms of cardio (or sometimes for no reason, I had a paranoia about appendicitis for years from it).  Gluten seemed to make things worse, so I stopped eating the obvious sources (bread, pasta, etc) two years ago but I was lacking in information and didn't know about cross contamination so I was undoubtedly still ingesting some. I was having difficulty eating as a wide group of foods started bothering me in a variety of ways- from stomach pain to fatigue to worsened rosacea or asthma. I suspected celiac or other food intolerances but my IGA test actually came back mildly deficient. I saw a gastro that told me to do a gluten challenge so she could do an endoscopy, which I did for 8 weeks.

It was the worst 2 months of my life. I spent the first two days being violently ill, with a reaction that resembled food poisoning but no one else in my family was affected. I developed severe fatigue and sciatic pain that made it hard to walk. I could not eat anything without having to lay down for an hour afterwards because it made me so sick to my stomach. I had so much gas in my stomach one sip of water would cause me to burp again and again for 30 minutes, and meals were much worse. My anxiety and depression, which had been pretty well managed for about two years, came back so strongly I had panic attacks while I was trying to sleep. I had such severe brain fog I lost the ability differentiate between dreams and reality and believed I was a ghost. I felt detached from my body, and I felt like someone else was controlling me. I developed pain all over my body and muscle weakness that made me exhausted after one trip up the stairs. My restless leg syndrome, which had been in remission for four years, came back affecting my entire body including my genitals in a way I believe is similar to restless genital syndrome. I was completely and utterly miserable and I spent 80% of the time in my bed wishing for death. They did the endoscopy and colonoscopy and I immediately cut gluten out of my diet and started attempting to avoid CC. My results came back negative on everything except for gastritis, which I believe was actually caused by the gluten.

Unfortunately for me, while some of the symptoms did decrease and I no longer feel like a ghost, I didn't get better enough. The muscle pain was diagnosed as fibromyalgia, the restlessness in my entire body is still present, my anxiety and depression have set me back pretty far, the brain fog is still bad enough that I can't drive, my stomach is still inflamed to the point that I can't eat grains or processed food and am living off bananas and chicken. It's been three months since my procedure. Before the trial, I was lifting weights and going biking and gardening and attempting to feel like a normal human being but now my body is still in utter chaos. I used my elliptical machine for 10 minutes yesterday, slowly, on the lowest setting, and today I am in utter agony. And no one will believe me that I have food issues. I essentially got a pat on the head from my gastro, and now the rheumatologist I went to for my fibro diagnosis wants to put me on Plaquenil because although my Lupus tests came back negative she wants to see if it will change anything, but I'm terrified to try something that heavy. I just don't know what to do! I can't even go to the store longer than 30 minutes because it gives me such bad back pain to walk for that long, and I can't work or go to school and I have no friends or hobbies that I can do. I'm so sad all the time, at this point I just want to die. I'm only 21! What can I do?? Does this sound like any disease you've heard of? Everyone keeps telling me it can't be celiac because "your scopes were normal," but so far no one has come up with a better idea. I don't know what I'll do if these symptoms never go away. Please help me.
18 Responses
1756321 tn?1547098925
My brain fog and fatigue were the worst with autoimmune pernicious anaemia (malabsorption of vitamin B12). This is one cause of gastritis but i'm lucky to not suffer pain.  

I bruise easily with iron anaemia. My niece on the other hand used to bruise easily due to calcium deficiency.  My pain was due to severe magnesium deficiency, severe vitamin D deficiency, hypothyroidism. Fatigue due to a every condition i have ever had basically. :)

Despite normal thyroid labs with thyroxine replacement i still have numerous symptoms. I have Hashimoto's thyroiditis (most cases of hypothyroidism are due to this autoimmune disease) but i also have cellular resistance issues. I am trying natural desiccated thyroid hormone to see if this improves.

The following info is from the book "The Everything Guide To Thyroid Disease" by Theodore C. Friedman, MD, PhD and Winnie Yu Scherer.

"Although the majority of people with Hashimoto's will not develop any other disorders, it's important to know what some of these autoimmune conditions are in case you do start to experience symptoms. Keep in mind, too, that you may be more likely to develop Hashimoto's if you have one of these other conditions.

Type 1 diabetes
Pernicious Anaemia
Addison's Disease
Vitiligo
Celiac Disease
Alopecia Areta
Systematic Lupus Erthematosus (SLE)
Rheumatoid Arthritis
Sjogren's Syndrome
Inflammatory Bowel Disease
Multiple Sclerosis (MS)"

I have answered more indepth about causes of brain fog and vulvodynia on other answers. The links you can read through...

Causes of brain fog:
http://www.medhelp.org/posts/Undiagnosed-Symptoms/Spaced-out-feeling-for-years--getting-much-worse/show/1579979

Vulvodynia:
http://www.medhelp.org/posts/Undiagnosed-Symptoms/Vaginal-pain-and-discomfort-for-three-years/show/1869148
Avatar universal
     The other answerer had some great ideas to  consider, so I'm going to focus on suggestions for having a successful appointment with a doctor. I have Unfortunately found that not all professionals are professionals. If you can, switch to a different gastroenterologist. I had to do that; I have Celiac for sure; I even had a Positive biopsy for Celiac during an endoscopy He did!! But he was totally stuck on the idea that all I had was Irritable Bowel Syndrome-- and kept telling me all about how He has it, going into detail about symptoms that he should not be telling patients. I found a new gastroenterologist and he's Great.

     Switching specialists is Very common; you can start off by requesting an appointment as a second-opinion appointment, or (unless you need a referral from your primary care doctor and they won't) you can schedule it as a regular first patient appointment and not mention that you've been evaluated by another gastroenterologist. If they ask, of course, it's best to be honest, but they may not. If you tell them, say that your primary care doctor wants you to get a second opinion or, since you're young enough to live at home, tell them a parent or relative insisted; it's not a great idea to say that it's because your last doctor was a jerk, haha. If they ask why you didn't mention sooner that you'd seen another doctor, use the parent or relative excuse again! It's unfortunate, but some doctors don't respond well to a patient who's already been seen and dismissed by another doctor.

    I hope it's not this way for you... but people sometimes have to see even five or More different doctors before they find a doctor who's both smart enough to make a diagnosis and professional enough to work with you to find a successful treatment. But it Will happen for you, eventually. It is very hard to keep going through illness and tests and appointments, but it sounds like nothing could be worse than what you're experiencing.

     If you can, look around online for patient reviews of their gastroenterologists, and ask your family and friends if they-- or anyone they can ask-- is able to recommend or warn against any of them. I haven't used the gastroenterology forum on this site, yet, but you could see if they have suggestions about finding a good doctor. Your best bet is to find out everything you can because a doctor who's good with one patient could be completely unprofessional with another. If you can, find out what illness they were diagnosed with/treated for. Some doctors are great if the answer is obvious and easy to deal with, but just give up if they can't figure it out right away. I've had doctors tell me that other doctors Really do that!!

   I may have a suggestion about a disease to look into that could cover everything, but I'm going to show your post to a friend who has it, first, because you don't want to know how hard it can be to diagnose and treat. About how old were you when your first symptoms/illnesses began when you were a child? Hers started when she was around 9. I'll post again to let you know about it either way!! I know what it feels like to be sick and hopeless, and you're even sicker than I have been/am now. Right now, I'm being evaluated for possible MS.... by a Second gastroenterologist because the first was dreadful and barely even listened to me.

    
Avatar universal
Thank you for the information and links!
Avatar universal
This is good advice; being a somewhat passive person, I absolutely love the idea of passing the blame of getting a second opinion off to someone else! I have found a reputable gastro whose office isn't too far away and I'm in the process of trying to get in to see him.

I can't actually remember what age everything started at, they've kind of built up at random over the years. Going from the earliest, I know I had stomach issues from the time I was very small, probably 4 or 5. The restless legs developed around 7, around which time I also had very, very bad leg cramps that were always attributed to growing pains. I wasn't diagnosed with asthma until middle school but I always struggled excessively with my breathing when I was active, so I suspect I had that pretty early on as well. Everything came on at some point past age 9, I believe. Apart from the easy bruising and scarring, which I've had since I can remember.

Could you tell me the name of the disease anyway? I've looked into some pretty bleak-looking disorders in my time. I promise I can handle it :)
Avatar universal
Aquarielle wrote:

"...People sometimes have to see even five or More different doctors before they find a doctor who's both smart enough to make a diagnosis and professional enough to work with you to find a successful treatment."

I never would've believed this, until I developed a mystery illness bout 8 months ago, and doctor after doctor has basically said too bad, so sad your life is now in shambles from the daily symptoms, but I don't know what it is.  Buh, bye.  No concern.  No places to look.  No referrals.  Just buh, bye.

In attempting to diagnose myself, I've read thousands of personal accounts of people with awful symptoms which were dismissed as "stress" or "anxiety" only to later finally find a doctor who knows what he/she is doing.  Some suffer terribly for months,  even years.  I recently saw a story about a woman who almost died because her dismissive doctor kept telling her it was all in her head, and that the only solution was for her to learn relaxation techniques.  SHE ALMOST DIED!!!  It took her husband almost threatening a second opinion out of that doctor to finally get a correct diagnosis from a let's say "better" doctor, and save her life!

Same thing with a woman I ran into at the hospital.  Her doctor(s) had told her there was nothing more they could do, and told her family to make final arrangements.  ONE doctor on that team decided a hail Mary was in order, and had a helicopter ship her to a nearby teaching hospital.  The thing s, she was IMMEDIATELY correctly diagnosed there, and is now recovering (when I spoke to her).  I have to agree that you must brush off all the sanctimony, mocking, and dismissal, if you KNOW something is not right.  It shouldn't be this way.  But, I've come to earn it really is.

That's what I'll never understand.  If you despise your patients so much (jumping to the conclusion they're making it all up or too dumb to know if something is wrong), then maybe it's time to retire.

I can't really imagine going to one of my clients' offices and, without any consideration for the facts, just arbitrarily decide they're making up the problem, that no problem exists, or that the problem they perceive isn't serious enough to warrant fixing (and they should just live with it).  I wouldn't have very many clients and would quickly go out of business, if that was my strategy.  ...And rightly so.  I wouldn't actually be serving anyone.

I am truly surprised how much healthcare has degenerated, over the past decade or so.  Most of my life, the little bit of care I needed was readily available and professionally provided.  Since becoming ill, I have seen that's no longer the case.  (One polite-enough doctor made some remark about wishing he were elsewhere, during my consult...almost certainly a thinly-veiled insinuation I was wasting his time.  I laughed and said, "Just get what I have.  Sure, you won't have to come into work anymore, but you won't be able to do much else, either.  If you have a fun car you like to drive, you might as well sell it.  Oh, and your career as a doctor will be over.  Good luck living with these symptoms very day."  He looked a bit embarrassed after that.  My husband, who was in with me, gave me the biggest smile.  Booyah!  :)
Avatar universal
The disease I'm wondering about is Porphyria; there are a number of different types, and some involve significant digestive problems. The testing process is so tricky that a person could have negative tests over and over again even though they have the disease. Have any doctors mentioned or tested for it?

    My friend (who has it) wants me to ask: Do you avoid just gluten or carbs altogether? Also, if you eats carbs, do you find that you feel any better after having eaten them?

    She isn't well and that makes a lot of things very difficult for her, so it took her some time to read your post and get back to me.


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