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[Tracy0504]

Sorry this is so long. Just some back story:

I'm 43 years old and single. Last March, I had to vacate a rental house due to mold and air quality issues. I knew my illness was caused by mold. My friends knew it was mold. Doctors, however, sent me on a wild goose chase that ultimately ended in nothing but my being left with a ton of medical bills. My symptoms were spot-on (no pun intended) with mold sickness (fatigue, weakness, leg tingling, nausea, upper respiratory issues). But docs seem to think mold is imaginary.

When all was said and done, I'd gone to more than one general practitioner, had one ER visit, two Neuro visits, two allergist visits, two CT scans, two MRIs, a sleep study and a myriad of other tests and visits. On the first MRI, a non-specific lesion was found in my frontal lobe. The first neuro brought up the possibility of Multiple Sclerosis that sent me into a tailspin (anxiety wise) and I went to two eye doctors to see if they detected optic issues (no). The neuro then sent me to a nerve study test which was the equivalent of being electrocuted for six hours. And guess what? Results were labeled "inconclusive." Another doctor turned around and acted like I was insane and put me on klonopin (that only made me sicker -- I don't do drugs well). Eventually, with time, on my own, I began to feel better. I went for a follow up neuro last November that showed no change in the lesion. The neuro shrugged his shoulders and said, "Could be MS, could be a brain tumor. Could be nothing. Wait and see." and dismissed me. Wow.

I never fully recovered (probably 80% recovered) but I felt good enough to return to work, the gym, etc. Even so, I started gaining weight without any explanation. In May I wrenched something in my neck badly enough that I was unable to turn my head to the left and if I did, I'd get serious headaches. The tingling in my foot came back. I went to the doctor (same office, different person) who immediately said, "I think you need to go see a neurosurgeon based on my previous MRI results." WHAAT? I declined (120 miles round trip and a huge co pay). She gave me anti inflammatories, which helped, but I never regained full mobility of my neck. My job, by the way, is seriously stressful (most of what I field are complaints) and requires me to sit for 10 hours a day and stare at a computer screen.. That's not helping my neck. The weight gain and all the sitting aren't helping my back. So "some" of this makes sense.

The fatigue started to return about two months ago. Along with it, water retention (for some reason my left leg swells and not my right), the tingling got worse, constipation (a life long issue with me) got worse. Insomnia (again, life long - I currently take Lunesta which doesn't do much) got worse. Sinus issues, worse. Well, you get the idea. Worse yet, I recently got on the scale to discover I'd gained FIFTY pounds since last year. !!!!!!

I made a doctor appointment and since you can only present one or two issues at each 10 minute doctor visit (and I had to wait two weeks to GET the visit), I mentioned a few symptoms and asked for my thyroid to be tested. She suggested a full blood panel (fine) and a future gyne visit (WHAAT?). It took three different girls to draw my blood (one even blew one of my veins). A week and a half later I was called and told the Vitamin D test they sent out showed I'm low (no big shocker since I spend so much time indoors), but my "blood wouldn't work" for the rest of the tests (I took that to mean the lab screwed up). She added, "Since you had an MRI last year you should probably have another one." It's like no matter what I'm seen for there, they're hell-bent on me traveling 120 miles and forking out a $50 co pay. I declined and went to another office.

At the second office, I saw a nurse practitioner and made the mistake of mentioning the insomnia and weight gain first (I've since learned that in a 10 minute visit, you're only listened to for 20 seconds and they're only listening for key words anyway -- and once they hear certain key words, you're done). She ordered the blood tests (everything "normal") but wanted to put me on an anti-seizure drug (??) that would calm my mind and has the side effect of weight loss. I declined.

In the past few weeks, the fatigue and tingling has gotten much worse. I started researching stuff online (funny how doctors hate that we do that but then again they're the ones who force us to). I was shocked to find post after post, site after site, listing my symptoms -- but attributed to gluten issues. Even on one post, the guy angrily said something about his "brain lesion" and my mouth literally dropped open. Wait. There's a connection? More research from me. Reading so much of this gluten stuff (much of it on this site), I feel like I'm maybe on to something. But I'm not sure.

I was a sickly child and have always had allergies (and I remember not being able to have corn products for awhile there). As I mention, I've had constipation for years (chronic -- like needing laxative or enema products on a daily basis). I'm amazed when other people say they've been constipated for days. HOW? When I'm constipated I get a fever, headaches, face pain, fatigue you name it. I went gluten-free about a week ago. A few days ago, I figured I may as well just do an elimination diet while I'm at it, also removing corn, soy, dairy, Aspartame and eggs from my diet. The good news? I lost 6 pounds (probably water weight since the face swelling is less). The bad news ? I feel much worse.

My symptoms (again, some are now worse since going gluten-free):

Severe fatigue and very tired even after sleeping.

Severe brain fog (the kind where you can't focus your eyes or think).

Dull headache

Joint pain (mostly in knees and fingers).

Left ankle and foot tingling

A pinching feeling in the back of my left knee

Neck and lower back ache.

Occasional random muscle aches but not severe

A slight burning or tingling feeling in my left hand (although since I hurt my neck I prop my head on my left hand all the time).

This is all bad enough I've had to take a few days from work in the past month and my days off are spent in bed.

Two days ago, I called the first doctor's office back and made a follow up appointment (the soonest they can see me is Nov 4). You can't talk to a nurse or a doctor ever (they're like the Wizard of Oz) so I left a message stating that I honestly think I have more than one thing going on here (back issues, stress and anxiety, and nutritional issues - maybe even pre menopausal). I stated, "You suggested a follow up MRI. Let's go ahead and get that scheduled so we can rule out anything there. I figured they'd get the MRI done and on the Nov 4th appointment I could present what I learned about wheat and gluten and ask for any direction on that. However, they decided to ignore everything I said and instead left a voice mail stating they want me to just go and see a neuro 60 miles away since this may be MS. And they left the message end of the day on Friday (yesterday) when I couldn't call them back. Dismissed again.

I feel more alone than ever. I don't fit the MS profile (except for having tingling, fatigue and a non-specific brain lesion). I don't fit the Fibrro profile. If it's Gluten or some other allergen, wouldn't I feel better and not worse now? And beyond that, doesn't a gluten-free diet make even MS and Fibro sufferers feel better? I feel like I've been hit by a truck.

I'm at the end of my rope. Add severe depression and anxiety to that long list above. I am all that I have. I can't be sick. I can't miss work. There's no one to take care of me. I just want doctors to find out what's wrong so whatever it is, they can treat me and I can at least have some quality of life. Gone are the days when they just admit you for 24 hours and run all the tests and then come up with a plan. Now they either drag it out or send you somewhere else like they hope you'll just go away. Meanwhile I'm here, barely able to function.

Friends hear me but in response they say stuff like, "Hang in there." or "Good luck" or (worse) "You have the WORST LUCK with medical stuff." I feel like I don't even belong on this board but I have nowhere to turn. I guess I just wanted someone to listen.

[mushroom]

My symptoms (again, some are now worse since going gluten-free):

Severe fatigue and very tired even after sleeping.

Severe brain fog (the kind where you can't focus your eyes or think).

Dull headache

Joint pain (mostly in knees and fingers).

Left ankle and foot tingling

A pinching feeling in the back of my left knee

Neck and lower back ache.

Occasional random muscle aches but not severe

A slight burning or tingling feeling in my left hand (although since I hurt my neck I prop my head on my left hand all the time).

This is all bad enough I've had to take a few days from work in the past month and my days off are spent in bed.

Welcome to the forum Tracy - you are among listening freinds here.

The symptoms that you list could all be attributed to celiac, including the lesion on your brain (which for celiacs is usually described as a UBO (unidentified bright object). Celiac disease is the great minimicrist and can present in many different ways: terribly underweight, or overweight; GI symptoms that doctors usually diagnose as Irritable bowel syndrome; constipation - or diarrhea - or sometimes both alternating; joint pains similar to arthritis or fibromyalgia (sometimes you will actually have these conditions because of gluten); brain fog and fatigue / lethargy; anxiety and psychiatric type symptoms; paresthesias (tingling and numbness); migraine headaches... the list goes on.

I do think that instead of going to see the neuro, driving 120 miles and paying a $50 copay only to be told the same thing, that your should ask your doctor to run a celiac blood panel ;

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

and when I say ask, I would amend that to say more like demand. Give them the list of your symptoms that are also celiac symptoms and say before any further investigation is done celiac disease should be ruled out.

It is possible that the mold was the trigger that set off celiac disease for you and why you have never recovered. People can live with the propensity to develop celiac for years but it often takes some kind of trauma to activate it - evan childbirth can be a trigger.

Good luck on getting your doctor to listen and comply with your request. But be sure to take the list - she can then even look it up on her computer if she is not convinced.

ETA: There are two possible reasons why you do not feel better without gluten: 1. Many go through gluten withdrawal similar to smoking; 2. You may need to give up dairy at first as well as gluten because you may be lacking the enzyme to digest it. I would resume eating gluten right away if you wish to be tested because the antibodies they test for can retreat quite rapidly in the absence of glluten.

[GFinDC]

Everything Shrommie said A+.

You may be low on some vitamins and minerals due to malabsorption. So it would be a good idea for them to test for that. The standard celiac tests are the blood antibodies (not 100% reliable though) and the small intestine endoscopy (also not 100% reliable).

Lack of vitamins can cause all kinds of problems, including the nerve issues you mentioned.

Since the celiac disease tests are not 100% reliable, it is best to try the gluten-free diet for a while even if tests are negative. A 3 to 6 month trial is probably good enough for someone with GI symptoms. By that time you will have learned how to eat gluten-free and will have adjusted to the diet. It is best to start with whole foods cooked from scratch at home, cooked by yourself. Avoiding all processed foods and restaraunts.

Get some probiotics to take also, maybe a couple times a week. And some digestive enzymes may help too.

A period of adjustment to the gluten-free diet is not unusual. Some people feel better right away, others take some time to recover.

[AVR1962]

By the sounds of your symptoms you have found the right place to be. Your journey sounds much like mine, with most of the same symptoms. Read the post on neuropathy here and I think you will relate. Quite honestly, I do not know how it all relates as far as blood tests. I was not dignosed with a blood tests. I was dignosed after months of tests. The pieces were put together like a puzzle. I have been gluten-free for 6 months and continuing to improve. I am 48 years old and was in real bad shape only 8 months ago. Stick with us here, read, I think you may have found your answer. Welcome!

[Tracy0504]

Thank you, all.

Feeling this bad is ... well, bad enough. Then I have the related stress (dealing with doctors, my job, etc.) on top of it all. So your replies are appreciated more than you know.

Regarding testing, I feel like I'm in a Catch-22 with the doctor (and if you can tell, I have little or no faith in the medical "community" at this point.

I can't actually talk to my doctor (just voice mail and then MAYBE I can get a clueless nurse to call me back). I'm two weeks into being gluten-free. I could leave a message saying I want to be tested for gluten but no guarantee they'll call me back. I could start eating gluten again in the hopes they'll test me on Friday (the 4th) but honestly? I'm afraid if I do that, I either won't be tested or I WILL be tested and the tests will show negative results either due to lab error, false negative or because I've been off of gluten. Then I'll be right back where I started. I've read too many stories of people not being tested or testing negative and their health turned around after awhile on the diet. Not knowing and two weeks of gluten-free down the drain and just annoying the doctor further (I feel like I have to bow down to her since I will most likely need her to submit FMLA paperwork). This is a very small town. Any doctor here is part of the same health system. If I lived in a larger area, I would be on my third office by now.

Someone else on another board mentioned that if you are tested for celiac or gluten and it's determined you DO have it, you then have a pre-existing condition on your record so good luck with health insurance in the future. If there were treatment for celiac/gluten beyond the strict diet, I'd really want to be tested. I kind of still do, but I guess at this point, I don't see the benefit (other than proving to doctors that I'm right).

With all I've read about gluten in the past few weeks, I honestly don't think I want that stuff in my body no matter what my health issues are. And "worst case scenario" if I do end up having some other autoimmune disease, or other illness, gluten-free will most likely only help to have a smoother ride.

I tossed and turned all night (I was awake more than asleep) and several times I almost thought I was having a heart attack my heart was thumping so much. I work from home doing tech support for a major company (which is a blessing) but I can't keep calling off. Then again I can't work with my focus completely gone and feeling every day like I'm in someone else's body. You have to be pretty sick to not be able to sit and answer the phone and enter information, you know? No one knows just how stressed I am at feeling so bad. I immediately checked this board to see if anyone had replied and ...wow. You made me feel a bit better. Thank you.

[domesticactivist]

It sounds like you are ready to try the diet, tests be damned.

So really go for it. One possibility with gluten-free making you feel worse is that you may not be 100% gluten free yet. Are you aware of cross contamination issues? I have a post on the blog linked from my profile and there are tons of threads on here about it.

Like others said, stay away from processed crap and stick to whole foods. Eliminating all grains and adding saturated fat was key for our family as well. With the vitamin d deficiency fermented cod liver oil from green pastures is something to look into. Epsom salt baths and trace mineral drops containing magnesium may help your insomnia, too.