I Feel So Lost And Hopeless, Symptoms Have Returned

[littlewillow]

I just poseted this on another Celiac forum and then remembered that I used to love reading here as it always made me feel better, like I wasn't the only one in the world suffering these symptoms.

Hello. My name is Amy. I'm a happily married mama to five.

I first started having symptoms in 2006 after a automobile accident.

The symptoms steadily worsened as time went by.

The ones that bothered me most were these...constant stomach pain and diarrhea, ear stuffiness and sensitivity to sound, body and muscle pains(like little pinches all over), starnge vision changes such as the inability to focus my eyes for a long period of time, tight throat and shortness of breath, pain in my fingers, toes and hips, loss of balance, facial numbness, numbness of my arms hands and feet, facial twitches, and many more.

I was seeing a naturopath who put me on the gluten free diet as well as several supplements.

I eliminated gluten, corn and dairy. Also MSG and most preservatives.

A little while down the road I started to feel better, more or less symptom free I thought. I've never lost the can't breathe feeling.

It seems to be my stomach right up under my diaphragm.

I did however have terrible balance and my eyes were causing me much pain and I was having double vision and seeing many floaters.

I was losing so much weight and didn't have much energy.

Sometimes I felt like I could barely breathe.

I saw a dr who told me it was all stress related and I had anxiety.

He suggested a celiac test to rule out my theory.

I had an endoscopy done.

I tried to explain that I had already been wheat free for nearly a year.

They had me eat wheat for a week or two before the test.

It was negatvive and the Dr said I didn't have celiac unless it was further down.

The tummy troubles were blamed on irritable bowel and or dairy.

I continued to eat wheat sparingly.

I continued to lose weight.

Most all of the old symptoms were gone.

About 2 months ago I ended up in the ER feeling like I was dying.

My blood tests were frighteneing.

I wish I could remember the numbers, but at this moment I cannot. MY hubby has them memorized.

The oncologist told us I was near transfusion numbers.

My b12 was just terrible..as was my iron

My red and white counts were terrible as well.

They told me I seemed to be absorbing no nutrients.

I had to have a bone marrow biopsy. (no fun that one)

The DR told us that my marrow is strong and it seems to be going along for the ride with whatever is affecting me.

They put me on b12 supplements and suggested shots.

SO lately I have been adding wheat back into my diet. The last few weeks more than ever. I have gained 12 lbs in just a couple months.

I've pretty much been eating anything I want, but dairy.

This is all so strange. I'm very confused by everything lately.

I've been snacking on crackers, cookies, and flour tortillas the past week since one of my children was in the hospital.

Suddenly over the last few days I am hit with those familiar symptoms.

Last night the ear stuffiness sensitivity was so severe and the pinches, or muscle pains was driving me to tears.

I have noticed that my balance has steadily gotten worse over the last month. I nearly fall over for no reason.

All of this that has gone on with me began in April 2006.

I feel as if I'm suddenly back in time with all of the symptoms back.

I have five children who were so happy to have their mom back.

I was able to get out and go to games, go on bike rides, live life....I'm afraid I will be bed bound again. That's how bad it was at my worst.

I was so dizzy all the time I couldn't even drive.

I'm scared and I'm tired of the Dr's telling me I have anxiety.

We just moved to a new state and I've popped in to the clinic only to hear I should really try an anti-depressant. Excuse me!!!!!

I feel like the most thankful blessed woman in the world..until hit with these darn symptoms again.

I just purchased a new dslr to fuel my passion for nature photography and portraits of my kiddos.

Now I can barely hold the thing steady.

I have figured out that if I avoiid dairy completely I have no diarrhea or stomach cramping.

MSG throws me for a serious loop as do a few certain preservatives.

I am beginning a food journal.

I feel so lost. I don't know what to do.

I have an appointment with a neurologist the 12th of feb.

This is where I've been sent for the numbness.

I've already been to two.

Over the last three years I have had every test imaginable.

MRI's, Xrays, bloodwork, ultrasounds, nerve tests, etc etc.......

I've seen so many different specialists.

I'm frightened more than ever.

I just turned 35 and I thought I had such a passion for life....now I just want to be well.

ETA I just wanted to say that if you made it this far and read through all of this I thank you for listening and for your time.

I know how precious time is.

[rinne]

Sorry you are feeling so wretched.

First of all, a biopsy after eating gluten for two weeks after being gluten free for a year is not going to be accurate, in my opinion.

Further doctors miss celiac year after year after year, perhaps you have read the signatures of posters here who have been ill for a decade or more and diagnosed with half a dozen other problems before they get to the celiac.

Stress may be the trigger for celiac but regardless of celiac it sounds like you have a problem with gluten.

I went for years avoiding wheat for months and then I would eat it again and I would feel fine and I would think well I must be wrong and then before I knew it I would start to feel really bad and I would stop. In later years when spelt became available I switched to it because of the lower gluten content and would be fine for a few days but then it would be a problem. In the beginning there were longer stretches of being able to eat it but it got to the point where gluten meant feeling bad right away.

My thinking would be to go gluten free, you know it made you feel better before.

[littlewillow]

Thank you. I know you are right.

Perhaps it's just that positive test that is just out of my reach and the endless questions in my head.

I know it did help before.

I told myself I will go back to gluten free and I know I must stick to it.

No cookie on earth is worth living this way.

Today my ears will drive me mad.

Are my symptoms common?

I have found lately that people are more open minded, but there always seem to remain those handful of doctors who treat me as if I'm a fruit loop.

I tell you if I were to go crazy it would be for the fact that I have five children, two who are teens, lol, rather than food and it would have happened like three kids ago.

I know I must be confident in knowing my own self.

I just wish more doctors would care more...it seems if I'm not a "classic" in a book then I'm suffering from depression or anxiety.

I'm thankful for forums (family) like this.

[rinne]

....handful of doctors who treat me as if I'm a fruit loop.

I tell you if I were to go crazy it would be for the fact that I have five children, two who are teens, lol, rather than food and it would have happened like three kids ago.

I know I must be confident in knowing my own self.

I just wish more doctors would care more...it seems if I'm not a "classic" in a book then I'm suffering from depression or anxiety.

I'm thankful for forums (family) like this.

I believe you, I come from a family of seven kids and being the oldest I remember five was crazy enough.

I hear what you are saying about doctors.

I think we will see more and more people suffering from gluten intolerance and celiac, there are studies showing a correlation between digestive disorders and antibiotics and who hasn't been on them? We are told to eat yogurt or take probiotics to counter act the negative impact on our gut when we do but how many do and in my opinion eating sugar laden yogurt to do that is the equivalent of using a water pistol to put out a five alarm fire.

[rinne]

P.S.

Where are your B12 and iron levels at now? I had lots of neuro symptoms when my B12 was really low and they all resolved once I brought those levels up.

[ravenwoodglass]

Are my symptoms common?

To me they are.

As stated your tests were certain to be negative if you only ate gluten for a week or two before them. Even on a full gluten diet there is still a risk of a false negative. I am glad to hear that you are going to go back to the diet. It sounds like it did help you a lot. The advice you got about the sublingual B12 is good advice, it will help those nerves heal a more quickly. I hope you are feeling better again soon.

[littlewillow]

My appointment pretty much went like this...

I asked for all of the blood tests that were suggested here.

I also asked about being tested for pernicious anemia and I was told "don't you understand that is what we are already treating you for?"

Actually no one ever told me that I have that.

Also I am curious how they could treat me for it with vitamin supplements if it can't be absorbed.

I've yet to read up and understand what it is exactly aside from an issue that makes you unable to absorb b12.

They tested everything again. We will see where my b12 and iron are, as well as all the ones suggested.

They also gave me a breath test for Helicobacter pylori.

I have the severe shortness of breath, as if someone was sitting on me...the dr told me it is more than likely a hiatal hernia.

She prescribed prilosec. I'm not big on taking prescription meds.

I'm waiting on the celiac tests, but in the meantime I have had terrible aches in my toes and fingers and I have the body cramps(bee stings) back worse that it has been in a year.

I'm not sure why since I haven't really eaten or done anything different.

As soon as I get the results of all the bloodwork I'll update.

Between the body aches and the stuffiness sensitivity to sound in my ears I think I'll go loopy.

Thank you for all your help and advice.

[rinne]

I am glad to know that they are checking your levels, since they are treating you for Pernicious Anemia it would be good to know if the treatment is having a positive effect. It would have been good of them to tell you they were doing that.

I wish I was more scientific, I read a little about Pernicious Anemia and it looks like it could be completely connected to Celiac, hopefully someone who knows more will come along and be able to address this. It appears to me that this is another case of treating the symptom rather than finding the root cause or root irritant!

I'm sorry you feel as if you'll go bonkers, I know.

How about a hot bath with epsom salts, it's good for de-toxing.

[rinne]

Just wondering how you are doing?

[nora-n]

B-12 supplements can be absorbed from sublingual supplements if the doses are large and you do not swallow it by mistake, and from patches, and there are b-12 shots.