Anxious About Weird Symptoms, Looking For Support

[takesflight]

Hi all,

I have been reading through the boards for the past few days, so I know that some of you have shared my symptoms. I have also been feeling increasingly anxious about what is wrong with me, so I guess I'm mainly looking for a place of support.

In October, after a bizarre ER visit due to weird leg cramps (attributed to starting a new birth control), I got a really bad burning left side pain. This was constant and a week later I went to the doctor, was prescribed rinitadine, which helped after about a week, but I still had this weird left side pain and intermittent heart burn. I went off it, got really bad heartburn/belching and took prilosec for 14 days at the urging of my PCP. Then after those 14 days saw a GI doctor, scheduled an endoscopy. The endoscopy was normal. I also went the cardio route, had EKG, ecko and stress test. All normal.

After this my belching and left side pain came back, so I decided to push for an appt with an allergist. Had skin testing, no allergies found. I pushed for an gluten antibody blood test and am waiting for the results. Since the blood test I have gone gluten and dairy free, with some slip-ups (maltodextrin?) but am worried because of this weird tingling sensation I've been getting on one area on my face. It's only been a week being gluten free. This would happen before but I attributed it to anxiety and the stresses of a new job. It would not happen in the same place. The side pain also moved to the right and I would get really bad gas-like pressure on my ribcage, paired with belching. This has subsided, and the left-side pain as well, since starting the diet. I only have some mild burps now. I am happy about this since I've read that many here have suffered from left-side pain. The tingling sensation worries me, as does slight joint pain in my finger knuckles and toes. These are all symptoms that come and go. I am only twenty-two and am feeling more emotional about this than expected. I know I should wait for the results and then decide my next move, but am honestly not looking forward to seeing my PCP about the other symptoms, as I have a feeling she'll take me for a young person with an anxiety problem.

I also have PCOS, as an FYI, and have started taking Aldactone since Nov 1st to treat hair loss related to that.

Thanks for listening, I appreciate it.

[red island]

I had facial tingling on both sides even after going gluten free in Sept, I had gotten cc'd several times during that period. Clamped down on my diet and became even more careful about cross contamination 2 weeks ago and the facial tingling has not occurred. I also had been having bouts of anxiety, depression and irritability all of which is getting better. I can deal with the GI problems when I get glutened but these other symptoms scare me. I hope things start to get better for you.

[mushroom]

Welcome to the board, takesflight. From reading your post I have not seen any symptoms which could not be attributed to gluten. Not to say that that is the cause, per se, but these are all symptoms that gluten intolerants experience. Did your GI test for celiac when he did your endoscopy??? (I would not be surprised if the answer is no.)

You have been gluten free for only a week, which is a very short time in terms of gluten recovery. Wait for the results of your blood tests and then, even if they are negative, I would cvontinue the gluten free diet for a good three month trial because the testing is not perfect, unfortunately, and gluten could still be your problem.. You might also eliminate lactose from your diet (milk, ice cream, cream, etc.) as lactose intolerance often tags along on the gluten intolerance ride, at least for a while. At the end of three months if nothing has changed it woujld be time for a reassessment. Keep in mind that the neurological symptoms (tingling) and the joint pain symptoms often take a bit longer to clear than the GI ones.

Hang in there and hopefully you will be feeling better soon. Feel free to post any other concerns. And do let us know your test results (get copies of them).

[revenant]

Hello,

It sounds like it could be B12 deficiency. Gluten intolerance can often damage our ability to absorb B12. Facial pain is a symptom of a moderate-severe deficiency, as can be hair loss. I wouldn't even recommend that you get a blood test because usually if you go to a blood lab and get a blood test asking for a B12 test, unless you can get your hands on the actual results they will probably tell you that you are in range. This is because the acceptable range spans very low, to the point of deficiency. I would recommend that you go out and pick up some supplements.

Luckily it's not a nutrient that you can overdose on if it ends up that you're not deficient, if you don't see any improvement within a few weeks just ditch it.

If you do try B12 supps, I recommend that you get methylcobalamin sublinguals (under the tongue tablets) and take 3000 ui a day until you see improvements, then continue to take 1000 a day. You don't absorb all of it, only around 10%. Methylcobalmain sublinguals are the most absorb-able type. Do not pick up ones that you swallow because if you are not absorbing B12, you will not absorb that either.

There are lots of lists of the signs of B12 defiency, here is one

Open Original Shared Link

"8. Facial pain, usually on only one side of the face at a time. This pain varies so much that it would be difficult to describe all the possibilities. It can be a dull pain in the cheek bone right underneath an eye. It can also be a sharp shooting pain across the forehead, sometimes coming downward from the scalp to the edge of the nose by the eye. This pain can be excruciating but is usually fleeting."

[frieze]

Hi all,

The tingling sensation worries me, as does slight joint pain in my finger knuckles and toes. These are all symptoms that come and go. I am only twenty-two and am feeling more emotional about this than expected. I know I should wait for the results and then decide my next move, but am honestly not looking forward to seeing my PCP about the other symptoms, as I have a feeling she'll take me for a young person with an anxiety problem.

I also have PCOS, as an FYI, and have started taking Aldactone since Nov 1st to treat hair loss related to that.

Thanks for listening, I appreciate it.

We have at least one poster here that was dx with RA (I think) and had the joint pain go away with gluten free diet. Also, hopefully you are aware of the carb/PCOS relationship? good luck

[takesflight]

Hi all, thank you so much for your response. Regardless of the blood test results, I am going to stick it out for at least three months. As far as I'm concerned not having the weird dull ribcage pain is a really good sign. Thanks for the input- based on your reply and the forum in general I know it can take some time.

I will also look into purchasing a B12 supplement. I wonder if Whole Foods has one that is sublingual.

Yes, I do know the carb-PCOS connection. Although I was diagnosed at 16 with PCOS, I was immediately put on birth control. About a year ago I decided to come off and have been a more active researcher since. There is also some speculation about PCOS and gluten-related intolerance, as well as studies that suggest that gluten reduces fertility. Even before I started having these problems I was limiting my carb intake. Unfortunately my PCP, despite having done extensive studies on PCOS, does not feel that I am at risk for diabetes at all and did not see a need for me to modify my diet.

Thank you all again. I will obtain a copy of the results and let you know what happens. I really appreciate having somewhere to voice my concerns.

[takesflight]

Oh and also, the GI did not take any samples. He said he would only do so if he saw any inflammation, and at the time I was not 'pushy' enough to advocate for myself.

[takesflight]

Hello again,

Just wanted to offer an update and look for advice. I have purchased Country Life - Active B-12 Dibencozide, 3000 mcg and took my first one last night. I also wanted to consult about a weird headache I've been getting on the right side behind my ear- is this possibly from withdrawal? I've never gotten a headache like this before and it's woken me up with a pulsing pain this morning and two days ago. My right ear has also been plugged in both cases, but a nasal spray has helped with that.

Thanks again!

[takesflight]

Another update as I await my blood test results, no headache/anxiety today, so I feel a world better. I do think I got accidentally glutened and on Tuesday and had some pain on my right side. Went away yesterday but came back right before dinner. I took a probiotic (Jarrow's formula) but have noticed that it always makes me more burpy. Odd or common?

Thanks for listening.

[takesflight]

Hi All,

Just got my blood results back and wanted to post them here.

Tissue Transglutaminase Antibody, IGG < 3

Value Explanation of Test Results

<7 Negative

+/- 10 Equivocal

>10 Positive

Tissue Transglutaminase Antibody, IGA < 3

<5 Negative

5-8 Equivocal

>8 Positive

Endomysial Antibody SCR (IGA) W/REFL To TITER GLIADIN (DEAMIDATED PEPTIDE) AB (IGA) 3

Reference Range <20 units

Criteria: <20 units Antibody not detected

I know that this means that my results are negative....

I'm not sure what to do now. Although my GI symptoms are all virtually gone, and I no longer burp all day or have the weird left sided rib cage pain, I have been having bad headaches...mainly in the back of my head. They too have gotten better, although I still feel slight pressure there and slight discomfort on my right. Yesterday the corner of my mouth and part of my bottom lip got tingly. This past weekend one eye was really dry. Today I woke up with a plugged ear on my right side again. The past four or five nights I wake up after sleeping for six hours. I'm not sure why.

The logical part of me wants to believe that these nagging symptoms are related to coming off gluten. I've never had headaches like these/my ear has never gotten plugged up. The tingling/numb sensation has happened a handful of times prior to the diet but seems to be decreasing in incidence now that I am supplementing with sublingual B12. Deep down I am worried that I have a brain tumor...rational or not, I guess anxiety has gotten the best of me.

I will continue on the diet since it is helping my original symptoms of left-sided pain and constant belching. I am contemplating seeing a neurologist...

Any thoughts or support would be greatly appreciated.

Thanks!

[ciamarie]

I know I have woken up with blocked ears, which appears to be due to dermatitis herpetiformis (DH). I'd actually had that issue many years before, but not quite the same back then (it didn't have itchiness and weepy-ness). I saw a Dr. about it and he suggested to try an anti-histamine to see if that would unblock it, as it might be due to some inflammation. I tried that, and that time it unblocked pretty quickly. I have more recently noticed that other sensitivities can also affect it, even though they're 'gluten-free'; such as MSG. You might want to keep a food diary, and see if that helps you pinpoint anything. And consult with a neurologist if you want.

[Bubba's Mom]

After going gluten-free I found that soy was giving me symptoms. Keep a log of everything you eat and note when you notice a symptom. There can be a delayed reaction with some intolerances and having a log will help you sort out if you have something else "getting you".

At the top of the list is soy, dairy, and eggs.

Good luck in solving this puzzle. Once you get it figured out you can omit it from your diet and feel better.

A headache at the base of the back of the head can be a common symptom to a food intolerance. It's unlikely that you have a tumor there. I know we can get anxious when we aren't feeling as good as we expect we should. Sometimes it just takes a while to heal, and that could be the problem?

Do be sure that you aren't getting a small dose of gluten somewhere. If you eat out be suspicious of that as a source of cc.

Edited to add: About 20-30% of people test negative in their bloodwork, but have celiac or gluten intolerance. Stick with the gluten-free diet.

[takesflight]

Thanks for your responses! I am starting to be more diligent about my food log and realize that it should be able to help me figure out other intolerances.

I do not have DH and am going to get my ear checked out since it has still been getting plugged randomly.

Also, I know the probability of me having a tumor is low. I guess with all my weird symptoms lately my anxiety sometimes goes through the roof. Thanks for your input.