Can Someone Maybe Shed Some Light On My Symptoms?

[answerseeker]

Hello, I'm new here and came across the forum while searching about my symptoms. a little background:

 

Feb 2012- diagnosed with GERD based on symptoms but never actually tested

 

April 2012- diagnosed with adult onset asthma after multiple uppper respiratory infections and sinus infections. my asthma has been very difficult to control. in the last year I have had 1 urgent care visit, 1 overnight hospital stay, and 3 rounds of prednisone.

 

in the last year I have noticed an increase in eye floaters, saw an opthamologist and was diagnosed with vitreous detachment (this typically affects people over 65 I am 40)

 

hisotry of recurrent yeast infections, anemia (although iron levels are good now), sinus infections (sinus xray and ENT visit showed nothing wrong with sinuses).

 

Symptoms:

bad abdominal pain, feels like early labor pain sometimes

nausea

sometimes dizziness

stomach distention

stomach rumbling after eating, sometimes I feel spasms

occasional heartburn

foot cramps to the point where my toes actually bend and look crippled. If I'm driving I have to pull over because it's crippling.

dark circles under my eyes and they look sunken in a little (my husband noticed this before I even did)

eczema, and rosacea

constipation, sometimes loose

bad hemmorhoids (sorry to much infomation here, pretty embarassing)

 

Tests:

celiac blood test= negative

endoscopty with biospsy = negative

abdominal xray= negative

h pyrioli= negative

gallbladder and liver are fine

CBC showed low calcium levels but my Dr. thinks it could be due to the recent hospital stay for my asthma? says shortness of breath could cause it.

also low alkaline phospate levels

 

test after test but my symptoms are still present. I have always had a hard time keeping weight on. I am 5' 3" and usually weigh 109 but I have lost 3 1/2 pounds in the last few weeks so I'm down to 105.4 right now

 

my asthma went undiagnosed for over a year. My dr. kept diagnosing upper respiratory infection and I was on 4 different courses of anibiotics within a year and a half.

 

extremely frustrated at this point and seeking some advice, thank you all in advance.

 

right now both my husband and I agree to try gluten free to see if I improve but it seems pretty clear I don't have celiac even though so many things point to it.

 

 

 

[nvsmom]

Welcome to the board.

With a negative blood test (was it just one test or did he run all - tTG's, DGP's, AGA's, and EMA?) and negative biopsy, I agree that chances are that you do not have celiac. You do have symptoms though so that could mean that you have Non-Celiac Gluten Sensitivity (NCGS) which is much more common, and has all the same symptoms of celiac disease without the intestinal villi damage - which is what those celiac disease tests look for. I'm glad you are giving the gluten-free diet a try. Give it a few months to help; I personally was still noticing obvious improvements at six months into the diet.

Some of your symptoms match hypothyroidism too. You might want to get that looked into.

Good luck.

[powerofpositivethinking]

did you have a complete celiac blood panel done?

 

that is total iga-used as a control to make sure you produce enough iga to validate the other results

DGP iga/igg

ttg iga/igg

EMA

 

what about low stomach acid?  many people with GERD actually have low stomach acid, and those PPIs may be doing more harm than good.  I take HCL capsules with hard to digest meals.  just a thought!  here's a great book on it Open Original Shared Link

Hello, I'm new here and came across the forum while searching about my symptoms. a little background:

 

Feb 2012- diagnosed with GERD based on symptoms but never actually tested

 

April 2012- diagnosed with adult onset asthma after multiple uppper respiratory infections and sinus infections. my asthma has been very difficult to control. in the last year I have had 1 urgent care visit, 1 overnight hospital stay, and 3 rounds of prednisone.

 

in the last year I have noticed an increase in eye floaters, saw an opthamologist and was diagnosed with vitreous detachment (this typically affects people over 65 I am 40)

 

hisotry of recurrent yeast infections, anemia (although iron levels are good now), sinus infections (sinus xray and ENT visit showed nothing wrong with sinuses).

 

Symptoms:

bad abdominal pain, feels like early labor pain sometimes

nausea

sometimes dizziness

stomach distention

stomach rumbling after eating, sometimes I feel spasms

occasional heartburn

foot cramps to the point where my toes actually bend and look crippled. If I'm driving I have to pull over because it's crippling.

dark circles under my eyes and they look sunken in a little (my husband noticed this before I even did)

eczema, and rosacea

constipation, sometimes loose

bad hemmorhoids (sorry to much infomation here, pretty embarassing)

 

Tests:

celiac blood test= negative

endoscopty with biospsy = negative

abdominal xray= negative

h pyrioli= negative

gallbladder and liver are fine

CBC showed low calcium levels but my Dr. thinks it could be due to the recent hospital stay for my asthma? says shortness of breath could cause it.

also low alkaline phospate levels

 

test after test but my symptoms are still present. I have always had a hard time keeping weight on. I am 5' 3" and usually weigh 109 but I have lost 3 1/2 pounds in the last few weeks so I'm down to 105.4 right now

 

my asthma went undiagnosed for over a year. My dr. kept diagnosing upper respiratory infection and I was on 4 different courses of anibiotics within a year and a half.

 

extremely frustrated at this point and seeking some advice, thank you all in advance.

 

right now both my husband and I agree to try gluten free to see if I improve but it seems pretty clear I don't have celiac even though so many things point to it.

[answerseeker]

I only had the ttg iga/igg my dr said the biopsy would be better than the additional blood tests. I did have my thyroid checked forgot to mention that.

I'm not taking any meds for GERD. The dr who said I had it a year ago said to take them for 2 weeks and I haven't taken anymore since then, especially because I don't really get heartburn

[answerseeker]

Is it still possible to lose weight and nutrients with the non celiac gluten sensitivity? Seems the damage to the intestine is what interferes with absorption? Emailing my dr yet again today to see what the next step is

[nvsmom]

. I did have my thyroid checked forgot to mention that.

Did they just check the TSH? That's not enough unless you are one of the thyroiditis patients who gets a super high TSH, that's only about half of them. It took 15 years for my docs to agree that my hypo symptoms were caused by hypothyroidism. I wish I had not blindly followed my doctors as I lost many years of good health.

Ideally, thyroid labs should be: TSH (should be near a 1, I did I not notice an improvement until mine was closer to 0), FreeT3 and FreeT4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

Intestinal damage can be patchy, and since the surface area of the small intestine is the size of a tennis court, it can be missed. You might want to consider requesting the DGP IgA and DGP IgG - they seem good at catching celiacs that the tTG's miss. The EMAIgA is a test for advanced damage and would most likely be negative if your tTG IgA was negative - they are similar tests.

I agree that you should check if they tested your total serum IgA levels. If that is low it can cause a false negative tTG IgA test.

Good luck.

[answerseeker]

My results say this:

Tissue transglutaminese IGA 0.16

Tissue transglutaminese IGG 0.15

Standard range <90

[cyclinglady]

Have you been tested for allergies?  Milk and eggs cause eczema and asthma in our family.  They also cause almost all the symptoms you described.  My rosacea completely resolved (had ocular rosacea too) after I identified and eliminated/rotated those allergy triggers.  While you may not have celiac disease, gluten intolerance is a strong possibility.  

 

My problems began with allergies (maybe celiac disease), antibiotics for two years for the rosacea, candida problems developed, causing leaky gut and became allergic to more things!  I worked with an MD to resolve the candida issues (prescription anti-fungals), went on a rotational diet and eliminated the foods that I was most allergic to.  Took probotics to help balance my intestinal tract and other supplements.

 

My husband, at the same time, developed body aches and chronic sinus infections.  He also snored!  He went gluten free 12 years ago and feels great!  He had no formal testing.  Intolerance or celiac disease?  It doesn't matter.  He's feeling great. 

 

Good luck!

[answerseeker]

I've been keeping a food journal as well. The other day I had a sandwich and about an hour or so later had the worst stomach cramps where I was doubled over, followed by nausea. But they come in episodes and I was fine the next day. Seems with celiac it lasts days after?

We went to Seattle last month for vacation and of course ate out every meal. By the last day I was sicker than I've ever been and had dizziness where the room would spin. That's when 2 days later I ended up admitted to the hospital with a severe asthma attack. They couldn't get the asthma under control after multiple nebulizer treatments. They finally gave me magnesium in my Iv and that got it calmed down, they kept me over night for observation. I was nauseated the whole time in the hospital and they gave me anti nausea meds through my Iv.

[kareng]

I've been keeping a food journal as well. The other day I had a sandwich and about an hour or so later had the worst stomach cramps where I was doubled over, followed by nausea. But they come in episodes and I was fine the next day. Seems with celiac it lasts days after?

 

 

 

Everyone's responses are different.  It may even have to do with how much gluten you got and what else you ate with it.

[answerseeker]

<Have you been tested for allergies?>

Yes I am allergic to numerous trees, molds, dust, dog and cat dander. Currently getting allergy shots. Also have allergic rhinitis

[IrishHeart]

I had vitreous detachment and floaters  in both eyes within months and I am not "over 65."

Do I think they are related to gluten intolerance? heck, yes.!

 

Your symptoms seem like gluten intolerance to me. And yes, it would subject you to allergies as well.

 

In the absence of positive blood test and positive biopsy, you may well have NCGS

It is equally baffling and equally life-altering to be so ill and have so many symptoms.

the treatment is the same as celiac. A gluten-free diet.

 

Have you read this?

 

Open Original Shared Link

[hayley3]

Did they test you for food allergies ?  I remember when I was first tested for allergies, I was allergic to trees, mold, and animal dander, in addition to foods.