New Here And Searching For Answers

[Nyxie63]

I've been on an Elimination Re-Challenge Diagnosis diet for 3 weeks. I'd suspected some food sensitivities and decided to give it a go. I cut out all gluten, dairy, corn, eggs, refined sugar in all forms, soy, and food preservatives/artificial colors/flavorings. Today is the first day to start re-introducing the eliminated foods. I decided to start with wheat. I ate 3 tablespoons of plain cream of wheat. That's where the fun started.

1/2 hour after eating the wheat, I starting having somach cramps.

An hour later, my GERD kicked in full force.

Between 3-4 hours later, I started feeling really bloated and started getting gassy.

Also about this time, I noticed both of my shoulders started hurting and had pain down my right arm.

Now, I'm noticing that its difficult to type. I'm having to use the backspace key a lot to fix all the typos and am having to hit keys more than once to get them to type. Both hands feel very uncoordinated and weak.

Is this all part of being gluten-sensitive or am I going nuts?

Due to other health concerns, I've recently had an endoscopy (this was before starting the elimination diet). They also did a biopsy of the small bowel. Nothing was found and the biopsy came back as negative for Celiac. My Gastro now says I don't have Celiac, but none of my drs have run a blood panel.

I also have subclinical hypothyroid (antibodies within range), throid nodules, adrenal fatigue, iron deficiency (ferritin is up from 7 to 28 now), vit D deficient (up from 13 to 28 as well now), recently been dx'd with PCOS and dr is looking at Metabolic Syndrome (Syndrome X). In addition, I also have elevated mercury levels. Just had my B-vits tested, but don't have the results back yet.

Is any of this tied into what's happening? Is there a chicken/egg thing going on here? I'm just rambling now and not really sure where I'm going with this. If someone would please be kind enough to point me in a direction, I'd be most appreciative. Right now, I'm clueless and kinda scared.

Thanks!

[cyberprof]

I've been on an Elimination Re-Challenge Diagnosis diet for 3 weeks. I'd suspected some food sensitivities and decided to give it a go. I cut out all gluten, dairy, corn, eggs, refined sugar in all forms, soy, and food preservatives/artificial colors/flavorings. Today is the first day to start re-introducing the eliminated foods. I decided to start with wheat. I ate 3 tablespoons of plain cream of wheat. That's where the fun started.

1/2 hour after eating the wheat, I starting having somach cramps.

An hour later, my GERD kicked in full force.

Between 3-4 hours later, I started feeling really bloated and started getting gassy.

Also about this time, I noticed both of my shoulders started hurting and had pain down my right arm.

Now, I'm noticing that its difficult to type. I'm having to use the backspace key a lot to fix all the typos and am having to hit keys more than once to get them to type. Both hands feel very uncoordinated and weak.

Is this all part of being gluten-sensitive or am I going nuts?

Due to other health concerns, I've recently had an endoscopy (this was before starting the elimination diet). They also did a biopsy of the small bowel. Nothing was found and the biopsy came back as negative for Celiac. My Gastro now says I don't have Celiac, but none of my drs have run a blood panel.

I also have subclinical hypothyroid (antibodies within range), throid nodules, adrenal fatigue, iron deficiency (ferritin is up from 7 to 28 now), vit D deficient (up from 13 to 28 as well now), recently been dx'd with PCOS and dr is looking at Metabolic Syndrome (Syndrome X). In addition, I also have elevated mercury levels. Just had my B-vits tested, but don't have the results back yet.

Is any of this tied into what's happening? Is there a chicken/egg thing going on here? I'm just rambling now and not really sure where I'm going with this. If someone would please be kind enough to point me in a direction, I'd be most appreciative. Right now, I'm clueless and kinda scared.

Thanks!

I'm not sure if I have any answers for you, except that the cream of wheat test is pretty telling. The endoscopy may have missed the celiac (or maybe they didn't look for the right things) and a blood test isn't 100% accurate either (so don't worry about not having had it).

My advice would be to avoid wheat and gluten in all forms and continue testing other food groups. You may be celiac, gluten intolerant or have a wheat allergy, but what ever it is, avoid it for now. You may still have other things going on, but the wheat/gluten you can control.

To find out if it's wheat or gluten that is a problem, you could challenge with barley, cooked plain. If you have the same reaction that you had to wheat, then it points to gluten.

Good luck! I'm sure others with more knowledge will offer advice.

[Nyxie63]

Thanks for your reply! I've decided to repeat the wheat introduction in a couple of days to see what happens. If I get the same kind of reaction, then I'll be trying the barley a few days after that.

Never had that kind of reaction to any food before and it scared the bejeebers outta me! Guess I was freaking out. Sorry about that. It was the strangest sensation. The pain also eventually went down both legs. My hands wouldn't respond the way I wanted them to. It felt like a combination of being sober in a drunk body and trying to walk through jello. I'm feeling better now. The pain has gone, motor coordination is back, although I'm still really bloated and gassy.

Its just so frustrating! I don't know if my body really is falling apart or if I'm just a huge hypochondriac. Its not like my drs are any help. Since the biopsy came back negative, the Gastro has lost interest in pursuing this any further. And the holistic MD (who you'd think would know better) has pretty much been useless. When I talked to him about suspected food sensitivities and the elimination diet, his reply was an off-hand "Oh sure. You can do that, if you want". Not exactly encouraging. I'm on my own here.

To clarify a little further, the Gastro was the one who mentioned Celiac, based on my GI symptoms. I initially went to see him this last time because a full GI exam is standard procedure for ruling out causes of iron deficiency. He did two biopsies of the small bowel, both negative for Celiac. I read somewhere that only 30% of those who test pos on the blood tests also test pos on the biopsies, so I wasn't surprised to have a negative result.

I'm vaguely wondering if these food sensitivites could have been triggered by a test the holistic MD had me do. Rather than a hair analysis, he had me undergo a 24-hour DMPS mercury challenge test. Basically, it consists of taking a chelating agent which mobilizes the mercury in your body and tests what comes out in your urine. Problem is, once mobilized, the mercury can settle anywhere and I wonder if it settled in my digestive tract.

Anyway, I'm rambling again. Thanks for listening.

[gfpaperdoll]

the reason that you have been going to doctors is because you have health problems, or at least I am guessing that. You have probably had a gluten problem for some time but did not know it. Have you read all the symptoms that it can cause. When you rid the body of gluten & then reintroduce it sometimes you get a bad reaction, most of us anyway, that should give you your answer. I would be careful about intro barley again, barley can cause some bad reactions.

do not mean this personally, but just posting this as it is my surprise, each time someone thinks that "it is all in their head" I find that very amusing & frightening that the doctors have taught us not to listen to our own bodies but to just trust what they tell us. I mean if you step on a nail & it hurts are you going to question that? I do not see a difference, except that we have been brain washed to think that dairy & gluten grains are good for us & that we cannot possibly live happily & healthfully without them.

I suggest that you ge the testing from Enterolab.com & get the gene test...

before you mess up & eat too much gluten & get a symptom that does not go away...

[Nyxie63]

the reason that you have been going to doctors is because you have health problems, or at least I am guessing that. You have probably had a gluten problem for some time but did not know it. Have you read all the symptoms that it can cause. When you rid the body of gluten & then reintroduce it sometimes you get a bad reaction, most of us anyway, that should give you your answer. I would be careful about intro barley again, barley can cause some bad reactions.

do not mean this personally, but just posting this as it is my surprise, each time someone thinks that "it is all in their head" I find that very amusing & frightening that the doctors have taught us not to listen to our own bodies but to just trust what they tell us. I mean if you step on a nail & it hurts are you going to question that? I do not see a difference, except that we have been brain washed to think that dairy & gluten grains are good for us & that we cannot possibly live happily & healthfully without them.

I suggest that you ge the testing from Enterolab.com & get the gene test...

before you mess up & eat too much gluten & get a symptom that does not go away...

I now feel officially spanked. Admittedly, a clue by four has often been required to get my attention. You've got it.

I've done some reading. Until last night, most of it has been fairly general and didn't go into detail about the neurological effects of gluten. It was only after reading some of the threads here that I realized the funky uncoordination stuff might be a symptom after all. I also read some of the studies and understand a little more now.

My confusion, in part, comes from the fact that many of the symptoms of gluten-sensitivity/Celiac are similar to symptoms of health issues I'm already having. My GI problems have been blamed on GERD. The GERD was blamed on being hypothyroid. Since hypoT can also cause heavy menses, that was blamed for the iron deficiency. Etc, etc, etc.....

So, here's where my head was yesterday: I was expecting a reaction, so I got a reaction. It wasn't the reaction I'd expected and I freaked. I didn't know if the expectation of a reaction caused the reaction, particularly the uncoordination, therefore the thoughts of hypochondria. I know better now.

I think part of this may also be denial. I really don't want there to be something else wrong with me. I'm 44 years old and it feels like my body has been falling apart the last 2 years. Up until the Gastro mentioned the word Celiac back in August, it'd never occurred to me that there could be a problem with food and no dr has ever mentioned it before. There's absolutely no family history of food allergies and I'm the first (yay! lucky me!) to have developed any of this stuff, including the thryoid disease.

The whole reason I did this elimination diet in the first place was because I suspected a sensitivity to corn (get palpitations, rapid heart beat, and severe fatigue after eating it). Figured as long as I was cutting out foods anyway, I'd do the whole thing and get it over with. It was really done out of idle curiosity.

Thanks for the info about the barley. So I shouldn't retest in a couple of days?

It'll be some time before I'll be able to afford the Enterolabs testing. Since I've been so ill (serious fatigue) the last 6 months, I haven't been able to keep up with my business and cash is in seriously low supply.

Anyway, thanks again.

[ravenwoodglass]

I think part of this may also be denial. I really don't want there to be something else wrong with me. I'm 44 years old and it feels like my body has been falling apart the last 2 years.

.

I do so understand the idea that you don't want another diagnosis added to an already long list. But, and here it is a big BUT, you may very well find that many of those seperate diagnosis fall by the wayside as you recover from gluten. Gluten can impact all body systems and many of us are diagnosed with other multiple conditions that are either caused by the antibody reaction or develop because of other celiac related issues such as malabsorption.

[HouseKat]

He did two biopsies of the small bowel

Does that mean he only took two samples, or he biopsied you on two separate occasions? If he only took two samples, that's not anywhere near enough. In Dr. Green's latest article in the New England Journal of Medicine (see Publicity thread) it states, "at least four to six endoscopic-biopsy specimens should be obtained".

Kate

[Nyxie63]

I do so understand the idea that you don't want another diagnosis added to an already long list. But, and here it is a big BUT, you may very well find that many of those seperate diagnosis fall by the wayside as you recover from gluten. Gluten can impact all body systems and many of us are diagnosed with other multiple conditions that are either caused by the antibody reaction or develop because of other celiac related issues such as malabsorption.

I think I'm beginning to understand. Its just a whole lot to wrap my brain around right now. Feel like I'm walking around with a huge question mark over my head. Part of me really doesn't want to accept this. I know I'll have to, but still....

I realize that the nutritional deficiences will most likely even out by sticking to a gluten-free diet. What about the other stuff? Has anyone had noted improvement with their thyroid/adrenal/other hormonal illnesses by eliminating gluten? Or is it simply more of a matter of damage control; i.e. by eliminating gluten things don't get any worse?

Have an appt with the holistic MD this week to get back a bunch of test results. Will show him my food diary and see what he suggests as the next step. If he blows me off again, its back to the yellow pages.

Thanks!

[Nyxie63]

Does that mean he only took two samples, or he biopsied you on two separate occasions? If he only took two samples, that's not anywhere near enough. In Dr. Green's latest article in the New England Journal of Medicine (see Publicity thread) it states, "at least four to six endoscopic-biopsy specimens should be obtained".

Kate

He only took two samples. *sigh*

Ya know, I'm really getting tired of substandard health care. I've seen 6 drs in the last 8 months (varying specialties) and not a single one of them has done a complete panel or adequate procedure. Its all been done in drips and drabs or they've done a half-azzed job.

Not going to rant not going to rant not going to rant not going to rant

Thanks for the info. Will print out a copy and hand it to the Gastro next time I see him.

[gfpaperdoll]

Nyxie,

I know it is all a shock & denial is a protective mechanism we have...

but be very glad that you have discovered this at 44 you whould soon be healthy as a 20 year old!!! I am 60 & I feel very young & healthy !!! & I was gluten lite for 10 years, thinking I had a wheat allergy, had never heard of gluten, until 4 years ago when I went gluten-free. My health continues to get better & better, it is really miraculous. I think being wheat lite for 10 years saved my life, as did my "allergy" to oats & barley from the time I was 25...

I do not know about thyroid but a lot of people on here do. maybe post another thread about that. But all your other problems should go away on a gluten-free/dairy free diet. I do suggest that you give up dairy also, cannot remember if you said that you did that.

I also strongly suggest that you start taking a gluten-free sublingual B12 right away, that is very important. no matter if you test okay on B12, start taking it. Any excess will just be excreted in your urine...

I will take a B12 every day for the rest of my life, that is the only med that I take, even my blood pressure med is not needed anymore, which I find hard to believe, but I have had it tested more than once & they rave about how wonderful my BP is...

wishing you the best, hang in there you can do. an apple a day...

[ravenwoodglass]

I think I'm beginning to understand. Its just a whole lot to wrap my brain around right now. Feel like I'm walking around with a huge question mark over my head. Part of me really doesn't want to accept this. I know I'll have to, but still....

I realize that the nutritional deficiences will most likely even out by sticking to a gluten-free diet. What about the other stuff? Has anyone had noted improvement with their thyroid/adrenal/other hormonal illnesses by eliminating gluten? Or is it simply more of a matter of damage control; i.e. by eliminating gluten things don't get any worse?

Have an appt with the holistic MD this week to get back a bunch of test results. Will show him my food diary and see what he suggests as the next step. If he blows me off again, its back to the yellow pages.

Thanks!

Check out the related disorders and research section of the board or just post asking specifically about the other endocrine related diseases. I know in my own case that I am now feeling normal and pain free and totally med free for the first time in my life. After 5 years gluten free my DS jokes that I am aging backwards, especially after my hair grew back. The antibody reaction can attack just about any system in the body and yes thyroid and other glands are included. The good news is that after the toxin and it's antibodies are out of your system the human body has a remarkable ability to repair and recoup. My signature says alot in that respect. As GFpaperdoll mentioned a sublingual B12 is essential and will help a great deal with energy and mood while you are healing and beyond.

[Nyxie63]

Ravenwoodglass and GFpaperdoll,

Thank you both so much for the info and support.

Every time I find something else new going on, my head goes into swivel mode for a couple of days. Then things settle and I can get down to doing some research.

I've been meaning to pick up some sublingual B12. Have to stop at the vitamin store to pick up a couple of other things anyway and will make sure to add it to the list. I'm taking how many pills a day???

One more stab at denial and then I'm done with it....

Was my reaction really that bad?