First Week Gluten Free - Looking For Answers

[Smith317]

This is my first post and my story is a little complicated so bare with me, I will try to make it short. Just looking for some feedback and anyone that experienced something similar or any advice. Little background: 26 yr female vegetarian for 5 yrs, was active before symptoms began

It all began back in July 2012. I started felling tired all the time, extremely sore neck and shoulders which caused severe debilitating headaches, brain fog, hot flashes, body aches, lightheaded etc (no stomach issues). I kept going to the doctor saying something was not right with me and kept getting the same answer, it is muscular. So I changed how I sat at work, did neck stretches, spent tons on chiro and massages. No releif. I almost passed out while food shopping so my 4th time to doctor I had done my research and said test for everything, Lyme, west Nile etc. (not gluten). My doc also ran a mono spot which to my surprise came back positive. I cried when she called because I was so relieved to have an answer and an end in sight. I was on work restrict of 1/2 days for a month. They said there is nothing you can do but rest. Very slowly I started to feel better. I wasn't myself until the end of October. This time period for me was a personal h*ll so I was so happy to have it behind me.

Fast forward to January 2013. The sore neck hit me first, then the awful headaches and hot flashes. Pretty much every symptom had returned. I was 100% convinced I had mono again. And this time it hit me even harder. I couldnt work at all, I was off work full days starting in early March with no diagnosis (chronic condition they called it) To make long story short it took me 5 visits to the docs again to get it through to them that this was not muscular and had to be mono again. They finally ran a more extensive blood test to see if mono was active currently and it was. No one could explain it. My CBC blood tests were normal. Last time they were elevated. I rested daily from early March and hardly left the house to do anything, I was told to be off work for 4 weeks and rest. I was starting to feel a little better and then March 22 I felt a million times worse. I began to notice when I felt my sickest I was burping a lot and even had some gas which always made me feel better. Usually during this time I had hot flashes too. One night I woke up with severe pain in my chest. I was so scared it was my heart. Then I starting burping and the pain went away slowly. Also good to note was that I wasn't sleeping well at all. One night I awoke at 4am and couldn't get back to sleep until 8am. Sometimes I just couldn't fall asleep until very late.

After that scare, I decided to see a diff doctor. He right away said I do not think you have mono again. Your CBC levels would be elevated if fighting off a virus and the other test isn't all accurate. He said I probably have something post viral and thinks CFS. I mentioned the burping and he didn't know what would be causing it besides a medrodose pack I had finished a while ago. I mentioned maybe systemic yeast as I have struggled with chronic yeast Infections for years. He pretty much said that was not it and doctors do not really believe in that. He decided to treat it like CFS and prescribed tramadol for my neck pain and amitriptolyne to help me sleep. He also mentioned a gluten free diet in passing. I kind of laughed it off and decided to research it some more later.

That night I took the tramadol and the neck pain was relieved significantly. I ate some tuna with pickles and a wheat frozen pizza. That night was awful. Severe stomach pains, gas, burping, chills and hot flashes. It lasted from 9pm-2am and it was awful. Something in my brain clicked and thought maybe the gluten from the pizza did it. Saturday March 31 was my first day gluten free. I also begun tramadol 2 times daily and the other for sleep at night. The week went well. I was feeling much better. Able to get up and do a few things. I didn't know whether to attribute to meds, diet, just good timing or what. The neck pain is still there when the pain meds run out so the diet hasn't eliminated them and I'm still having trouble sleeping.

Here's the kicker, I was doing very well until last night I awoke at 3am with severe stomach pains again. I couldn't pass gas or burp so I started throwing up stomach acid. After that I could burp some and my stomach was ok enough to sleep. But this morning I awoke with an upset stomach and it lasted all day (still there now) with burping and gas all day. I hadn't eaten any gluten and am 99.99% sure there was no cross contamination. The only single factor to my two worst stomach pains was having tuna that day. I can't imagine it was from the canned tuna. Right now I don't know what to do.

Do I continue the gluten free diet? I've read I can't be tested if I'm not currently eating gluten. I wish I would have been tested before going gluten free. I am also afraid if I go without eating it, I will be intolerant forever as I've read ppl have problems with the body processing it after cutting it out. I don't want to stop eating it if that is not the problem.

Do you think the mono caused a gluten intolerance? How do I know if gluten is the culprate if I've already taken it out of my diet and now had stomach problems? Could tuna be the problem? Anyone have any experience with systemic yeast? I can't find a whole lot about it on the Internet but still consider it a possibility. What else could be causing all of these symptoms? What could be causing the stomach issues? Are they related?

I am going to see a neuropathic/alternative medicine doctor on Monday as well as my regular doctor to see how the tramadol is working. He said if my neck muscles are still so tight he wants to do trigger point injections. What should I be asking these two doctors? I just want some answers and some way to get back to being normal me. I have also been tracking my food and how I feel for the past two weeks (one of them gluten free).

THANK YOU FOR TAKING THE TIME TO READ THIS! From a person struggling to gain their life back, I sincerely appreciate it!

[mushroom]

Hello, and welcome!

 

For starters, if you have been gluten free for only a week, start eating it again now and it will probably not be too late for accurate testing.  Normally you can get by with one week off.

 

Celiac disease is genetic in that you inherit the predisposition to develop it.  However, it requires a trigger to activate it, usually physical or emotional stress.  For many women it is childbirth.  For you it could have been mono, yes.  Stomach issues are definitely related; in fact, they are often the primary symptom, because the autoimmune antibodies produced in response to gluten attack the lining of the small intestine, interfering with digestion and the absorption of nutrients.  Burping, gas, GERD are all common.  Celiac also affects joints and connective tissue and can trigger neurological symptoms as well,  There are literally hundreds of symptoms of gluten intolerance, so I would urge you to get yourself tested on Monday.

 

As for the tuna, was it packed in soy?  Many of us who are gluten intolerant are also soy intolerant.

 

And no, you cannot make yourself gluten intolerant by not eating it.  If you stop eating it and have problems resuming eating it, it means you have an intolerance, not that you have created an intolerance.  The body copes the best it can while being bombarded with gluten, but once given relief from it will let you know it does not want it.  And sometimes other intolerances that have been masked by the gluten response show up when gluten is removed.  You can find out very quickly if you have a gluten problem by resuming eating it -- it will let you know.

 

Do let us know how your appointments go on Monday and let us know also how else we can help you.

[flowerqueen]

Wow! There's a lot to get my head round in this post. Sorry you have had such a difficult time. I sympathise with you as I had a raw deal which lasted over 2 years in pursuing a diagnosis, and I had to start eating gluten again to get a proper diagnosis, and it wasn't pleasant. It does sound like wheat/gluten is the problem, I suffered with severe acid reflux as one of my symptoms, which burned my throat and tongue, and I know how bad it can be. I also felt like i had a ball of fire in my stomach 24/7.

I would not want to say, start eating gluten in order to get a diagnosis as that must be your decision. What you must take into account is that, even when you first stop eating gluten you may still get episodes of being ill. It's a bit like de-toxing and sometimes people actually get worse before they get better. I was gluten free for many months before I stopped getting cold sweats and feeling very sick or rushing to the bathroom, possibly due to erroneously eating traces of gluten, as the diet takes a while to get used to.

You can either eat gluten for 6 weeks to get a proper diagnosis with biopsies (which as I said, must be your decision) or assume it is gluten and just not eat it ever again. The down side of not eating it and not getting an official diagnosis is, if it's not gluten that's your problem you are missing out on foods you may like and you still haven't got to the bottom of what is making you ill.

It's a difficult decision but only you can chose, it's your body. Good luck.

[1desperateladysaved]

Hi Smith,

 

I just wanted to say that I thought my trigger event was mono 30 years back.  It was after mono when the foggy fatigue took over my life.  Now, I think I may have gotten mono, because the celiac disease already had me down.  At any rate, I hope you will soon have some definitive answers.

 

If you have had blood drawn, in the last 6 months or so, it is possible the lab has some saved.  I was told, after my last blood test, I could add on items in the future.

 

I am feeling better and I hope you will be too.  Keep going, the way can get complicated with twists and turns, but you can get somewhere.

 

I hope you will be "Back from Nowhere" soon.

 

Diana

[IrishHeart]

These guys have addressed the gluten/testing aspect, so I would like to offer my two cents on the tramadol and amitryptiline and trigger point injections issues.

 

Been there/done that ......and I'm afraid that all the meds in the world will not help that severe muscle pain or get rid of those trigger points if gluten is fueling the inflammation in your body.

 

I had excruciating and debilitating muscle/joint/bone pain from unDXed celiac --even walking became difficult --and I could not even rest my body on my bed without pain. It was hell and I had awful insomnia.....and that was how they treated me--drugs. Those meds did nothing for me except wreck my gut (which was already messed up)

 

Those drugs can bring about temporary relief, yes, but they also come with side effects. They could be causing your stomach pain.

Tramadol also causes serious constipation and addictive. It causes a racing heart. Amitryptiline affects seratonin and will indeed help you sleep but please be careful to wean off these meds (do not stop abruptly)  or you'll have nasty symptoms. By all means, use them if you need to--to function--but realize that they are only treating the symptoms, not solving the problem.

 

I see many people given a DX of CFS or Fibromyalgia ( I heard the same things) when in fact, they have celiac disease. These two syndromes may very well resolve off gluten. 

If you can stand it, please get tested so you can receive the appropriate follow up care you deserve.

(please do this before you start seeking out naturopaths, etc. as they will just prescribe a number of homeopathic potions and muddy the waters) This is just my opinion and you can disregard it if you wish, but I did all the same things you are doing for 3+  years and it was all for nothing. I spent thousands of $$$ on nothing. Homeopathy does not treat celiac.

 

I tried acupuncture, massage, TrP injections, anything I could tolerate--- as it was painful to be touched. To no avail.

Until I eliminated the gluten and started to heal.!

 

I am telling you all this because I have been in your exact same painful shoes and it took me a while to get well, but healing happens. Your painful muscles can get better and and those trigger points can resolve with proper massage, physical therapy and stretching. When the gut heals, your body will absorb nutrients properly and your muscles will be noursihed as they should be.

My body was filled with them and I was about as bad as it gets (PTs and MTs told me my muscles " felt like wood" and they did not know if they could help me, but I persevered) and I was told to get a scooter to get around as there was nothing they could do for me..

That's just not true.

 

I was a burning mess of pain and dysfunction and thinking death would be easier....and now, 2 years postDX, I have rejoined the gym after 6 years of being unable to do anything physical, and I do yoga and I am getting better every month. I am not 100%, but undoing a lifetime of damage takes time.

Hang in there! 

[flowerqueen]

I agree with you totally Heart, regarding the Tramadol and Amitriptyline as I too have taken both - and still do take Amitriptyline as the facet joints in my spine are degenerating causing sciatica. I was told not to come off them suddenly and had to carefully come off them gradually reducing the dose. Tramadol I took myself off 'cold turkey' not realising I shouldn't do so - no one told me otherwise, and boy was I ill! The side effects of Tramadol were no worth the pain relief. (One of the side effects was severe itching inside my nose that nearly drove me mad!)

However, I would also like to add, that it is possible to have fibro/CFC as well as being coeliac, as I have this condition - although my fatigue levels improve from time to time. The same as it's possible to still have IBS as well as Coeliac disease, as I still have that too (being diagnosed 30 years ago) and if I don't eat enough fibre I get the same symptoms as before - which are very similar to coeliac disease). On the plus side, my Thyroid medication keeps being reduced, since I was diagnosed with coeliac disease.

[GottaSki]

Another Celiac diagnosed with Fibro here.  I don't want to get into an argument about the validity of the set of sypmtoms commonly labeled Fibromyalgia -- only state that for me -- until we understood just how damaged my small intestine was from the four decades of undiagnosed Celiac Disease I had zero chance of getting my muscles and joints functioning again. 

 

When your symptoms "flare" those flares often get worse before they get better.  Mine as well as my daughters did -- my worst flare was after three years gluten-free -- I sincerely hope you improve quickly now that you have removed gluten, but one week is way too early to expect muscle or joint issues to resolve.

 

Hang in there -- What everyone has said before me is very valuable -- oh and my vote is for the soy in the canned tuna as well -- I was confused by that one myself -- finally tested it with a can of tuna packed in water vs - fresh tuna caught by my hubby.  No problem here with fresh tuna.

[Smith317]

Wow, I can't believe so many have taken the time to respond. Thank you, thank you, thank you!

For starters, I will ask the doctor tomorrow about being officially tested. What I didn't mention in my OP was that my wedding is on April 20th and I am trying to do everything I can to get this under control before then. I realize full recovery will take much longer, just trying one step at a time. We also have a honeymoon planned for after the wedding and I would like to be able to enjoy some of it. I realize this may be hard while on vacation though For these reason, I will probably continue on the gluten free diet for at least a month to see if I have any improvement instead of going back on it in order to be tested. As much as I would like an official diagnosis.

I looked and the tuna had soy as an ingredient. The first time I had severe problems was when I ate a can of it. Friday I had dry roasted edamame (soy beans) in the afternoon and awoke at 3am, my stomach ache and burping still haven't resided. Im burping as i sit here typing! Its so weird, as this is all new to me within the last few weeks. No burping problems before then. It is probably in my best interest to drop soy as well. I never had a problem with soy before though? I eat tofu all the time being a vegetarian. A little disheartening to stop gluten, soy and meat, but as this point I'm willing to do anything to get better. Perhaps after the wedding/honeymoon I will seek testing, unless I feel so well that I don't need it.

I do think the mono plays some role in this puzzle as before then I was completely healthy. And not to give TMI but yes, tramadol gave me constipation too! I was actually wondering if my recent stomach issues were from that. Ive had to take a laxative as i am usually very regular. Today was the first day not taking it and my pain was bearable with no other bad symptoms (I was only on it a week). I still need the other for sleep as I can't fall asleep for the life of me. I want to treat my symptoms not mask them, I am a very big advocate of that. It's just so hard when you don't feel well!

Does anyone else here have a problem with drinking alcohol? This has been the case for me for about 4 years, I can't tolerate even a glass of wine, it makes me feel sick. Just curious if its related as I never found out why. In college I could drink without a problem.

IrishHeart - you give me some hope as my tight neck muscles are my worst symptom bc they lead to debilitating headaches! I am going to ask about physical therapy for my neck tomorrow. When I believed it was mono, I didn't think PT would do anything for me. Now I'm thinking it worth looking into.

Oh, and just to note, my vitamin d was the only thing that was relatively low at 33. Normal showed as 30-100.

Everyone else, thank you again! As of now, I'll be continuing on this journey and update you as to my progress.

[pianoland]

Glad to hear you're setting up an appointment. So many of your symptoms relate to mine.. for starters, I believe mono was my trigger. I also had issues with chronic yeast infections, muscle fatigue and soreness, and the most obvious one, stomach issues. This doesn't mean you have celiac but it could mean a gluten intolerance or an intolerance to something else.

 

I recommend keeping a detailed food log and include reactions.

 

Good luck and keep us updated!

[GottaSki]

Congratulations on your upcoming wedding!!!!

 

You are correct that the Mono either triggered or exacerbated your symptoms.  I know how hectic the weeks before your big day can be -- but this is important -- schedule time for you...your symptoms will get worse if you are stressed -- even with good reason.  Perhaps try a soak in a hot epsom salt bath - get those shoulders neck down in there for at least 15 minutes...this is how I get my creeky bod moving each morning.  Like Irish -- I am all too familiar with that tight neck / shoulder dealio -- for years my husband couldn't figure out why I'd jump outta my skin with pain when he simply rested his hand there -- we have figured it out now and you will too.

 

A gluten free honeymoon may just be the perfect thing to give you a jump start towards improved health -- let us know how we can help you plan any of it -- we are kind of good at that sort of thing

[GottaSki]

Had a thought early this morning -- when we remove foods we often replace them with others that can also be problematic -- where are you getting protein now?  If it is a lot of legumes and nuts -- those can be very difficult for some of us to digest.

 

I know you said you are vegetarian - but you also said you would like to do anything to feel better...perhaps consider some good quality poultry.  And replace the canned tuna with fresh salmon, tuna and other fresh fish.

[flowerqueen]

Hi again. I can't tolerate alcohol in any form, I don!t know whether this is because of coeliac disease or not as I developed an intolerance to it about 10 years ago,even a thimble full of alcohol will give me a severe migraine headache, where I can't actually see properly. Also, I don't think you are allowed alcohol while taking Amitriptyline. (There's a warning in my box saying to avoid alcohol, so please be careful!)

Congratulations on your forthcoming wedding and good luck with the Doctor's appointment.

[beefree11]

Hello!  Congratulations on the wedding coming up!!    (My daughter is much like you:  reaction to corn, soy, gluten, casein, egg whites)   She has Hashimoto's and hypothyroid.  Then came the mono/Epstein Barr virus. The gluten sensitivity.  Then we found poly-cystic ovarian syndrome. 

 

Isn't mono and Epstein Barr and chronic fatigue pretty much the same?  Isn't it a life long virus that can be reactivated? 

 

Have you been thoroughly tested for thyroid issues?  Seems much of this goes hand in hand with thyroid and Poly-cystic ovarian syndrome, too.  Just a thought.

 

And, did you know some of the environmentally safe cleaners use soy?  I was buying BABY clothing soap and it contains soy   Be careful out there.

 

Here is something I found about Epstein Barr and neck pain,  recently: 

 

Authors: Shokouhi G, Naghili B.
University/Hospital: Tabriz University of Medical Sciences, Tabriz, Iran
Journal: Neurosurgery. 2005 May;56(5):E1158

Introduction: The authors present the case of a young boy whose acquired tonsillar herniation (Chiari) resolved after conservative treatment for the Epstein-Barr virus.

Patient 1: 6 year old boy had headaches in the back of his head for one weak, neck pain, and balance problems. Upon examination, he was found to have a fever and sore throat as well. Neurological exam showed abnormal reflexes in his arms and legs. Blood tests showed some irregularities as did a spinal tap. MRI showed that his cerebellar tonsils had herniated to the level of C1.

Treatment: The doctors suspected that the herniation was due to swelling related to the Epstein-Barr virus and chose to treat it conservatively.

Outcome: Three weeks later the boy was asymptomatic. Two months later a follow-up MRI showed the tonsils were higher, but had not returned completely to their normal position.

Author's Discussion: The authors point out that this is a rare complication of the Epstein-Barr virus and go on to emphasize that in cases where the Chiari is thought to be acquired, treating the underlying problem may resolve the Chiari.

 

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[Smith317]

Hi all! I just returned from a refreshing walk outside. The weather has warmed up here in PA and its nice to have some "me" time out in the sun. Hoping it helps boost my vitamin d too.

Monday was a long day of doctors apps and I havent gotten to update you yet. I saw my primary and a neuropathic. 1st time with the neuropathic and I was overall happy. He agreed for me to cut out wheat for the most part. He suggested only sprouted wheat. Don't know a whole lot about that other than seeing it in refrigerator aisle at store. I think I will just stick to no gluten. He also said with my digestive issues to cut out dairy so far I have managed and it actually hasn't been as bad as I thought. Cheese and yogurt are the main things I miss. And he also said no peanut butter, not sure why on that one but I'll give it a try. With all of these restrictions I haven't cut out soy completely yet. Mostly I am only eating fruit, veggies and no processed foods so I am staying away from a lot I think. He also suggested poultry like gotta ski. I really didn't want to do it, but if I'm going to get better its worth a shot. I had about 4ozs last night. Wasn't pleasant but we'll see.

The neuropath seems to think a lot of my problems stem from my BC pill. I've been on it about 8 years with no problem, but at his suggestion I'm stopping. After some research I found a lot of women with bad side effects including IBS which you'd never think related. So just a thought for anyone reading this on BC, do some research! I'm hoping all these things combined start to improve my health. I feel pretty good aside from the neck pain a headaches. My primary wrote me script for physical therapy so I am looking forward to that.

The only other major concern is my insomnia. I was doing amitriptolyne but neuropath suggested 5 htp a natural supplement that produces serotonin and enhances mood, lessens anxiety etc. I had a wonderful nights sleep the first night on it, but last night I tossed and turned for hours and slept on and off all night. Going to give it another try tonight. Warning: you cannot take 5 htp with any other serotonin drug. The insomnia, neck pain and headaches are my most bothersome symptoms right now.

Have to run, but I hope everyone is well!

[1desperateladysaved]

I don't think that wheat sprouts is safe, if you do have celiac.  But I am one that reacts to barley grass planted in the garden, so I would ask for more information on that.

[IrishHeart]

Smith,

What exactly is a "neuropathic"?

Do you mean a naturopathic doctor or is this a Neuropathic doctor--who specializes in neuropathy??

If so, please go see a gastrointestinal doctor for your digestive issues.

This guy is giving you VERY wrong information.

If you need to avoid gluten, you cannot eat sprouted wheat. Period.

You're getting some really mixed (and possibly erroneous) information.