Should I Try It Again?

[Becksabec82]

I've had a long list of misdiagnoses.  I first started having digestive and skin problems when I was 18 or 19.  I'm 30 now.  I was diagnosed with GERD, IBS and finally IBS-D.  My doctor never did a colonoscopy.  When the medication for the other conditions they  thought I had failed,  I saw a gastroenterologist (who is also the only doctor who could diagnose my mom's colon cancer) and he said it sounded a lot of like IBS, and gave me medication to try.  I also started having skin problems around the same time -  hives with no known orgin, facial redness, sensitivity.  The hives happened on and off for a few years, they never found the cause.  I was diagnosed with rosacea when I was 22.  

 

I started having hives and rashes again a few years ago.  After an elimination diet, they thought I had a gluten intolerance.  I was gluten-free for quite some time with no skin issues or digestive issues either.  I stayed on it for a year and a half, but after I had my son, I was told that sometimes that kind of stuff goes away after pregnancy due to chemical changes.  I slowly re-added gluten products and everything was fine.  Probably about 6 months later, I started having problems with chronic diarrhea, stomach pain, gas, etc.  That was about a year ago and I'm still having problems.  My PCP just has me taking medication for it as needed, but of course it doesn't prevent it.  I don't even see that eating anything in particular triggers it.  If I eat anything, my body is going to be miserable.  I started having skin rashes just very recently.  I've had a red rash on my stomach (which is where I had them frequently before) on and off, and today I started getting a rash around my lips and on a couple places on my face.  I just kind of wondered if I should re-visit the gluten-free diet.  

 

Edited to add:  I started having problems with having frequent infections about a year ago.  My doctor hasn't been able to find a cause.  I had bloodwork done a couple months ago, and the only thing abnormal is that my IGA is a little low.  My vitamins/electrolytes were on the very low side of normal, but not enough to cause concern.  

[mushroom]

Hello, and welcome to the board.

 

You mentioned blood work done a month ago and an abnormal IgA (low).  Did they do any other tests in the celiac panel?  And if so, were they all IgA tests?  Because with an abnormally low total IgA any such tests would not be accurate for you.  If you have not had the rest of the panel, it should be run using the IgG tests rather than the IgA:

Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgG
Anti-Tissue Transglutaminase (tTG) IgG
Deamidated Gliadin Peptide (DGP) IgG

 

If you have had previous celiac testing and would care to post the results on here we would be happy to look at them with you.
 

[Adalaide]

If you have not had those blood tests run, I wouldn't recommend going gluten free until you have. With a small child you can find yourself in a difficult situation later trying to get a diagnosis for them. If they are all negative, ask for a biopsy. With vitamins on the low side of normal, but not having been eating gluten for any significant period of time after being gluten free, this could be the beginning of a living hell for you if you don't go gluten free again in the near future but it doesn't sound like it is bad enough yet to be past the window in which you can survive another few weeks to get the biopsy. If it is too difficult to live with a few more weeks, screw a diagnosis, as long as you can stay gluten free for life.

 

There are really two reasons for a diagnosis. First, some people have trouble with staying gluten free. They never know if it is celiac or not and so never take it seriously. The amount of harm they could be doing to themselves is unimaginable every time they have just a bite. The second reason is as a parent it can make it easier to push for a diagnosis of a child, especially if symptoms are so bad that your child absolutely MUST go gluten free before a biopsy. Without medical backing, it will be near impossible to get a 504 plan for a child and have schools and colleges provide them with a save environment and food.

 

I would say overall though, that if you have been eating gluten for a year and have low vitamin levels, there is every reason for concern. It could be a million things, could be celiac. If it quacks like a duck, waddles like a duck, its probably celiac. You already know being gluten free isn't a death sentence. With a toddler around, they can be little gluten bombs, it would be a great time too to just throw everything to the wind and make your house gluten free. Better to never know the love of a gluten pizza crust, then to lose that love later (imho). If your little one never gets attached to pizza, bread and a million gluteny goodies, there will never be the emotional pain of losing it.

[Becksabec82]

  On 4/14/2013 at 8:53 PM, mushroom said:

Hello, and welcome to the board.

 

You mentioned blood work done a month ago and an abnormal IgA (low).  Did they do any other tests in the celiac panel?  And if so, were they all IgA tests?  Because with an abnormally low total IgA any such tests would not be accurate for you.  If you have not had the rest of the panel, it should be run using the IgG tests rather than the IgA:

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgG

Anti-Tissue Transglutaminase (tTG) IgG

Deamidated Gliadin Peptide (DGP) IgG

 

If you have had previous celiac testing and would care to post the results on here we would be happy to look at them with you.

 

 

No, my doctor didn't do a celiac panel.  She wanted to check my immune function and electrolyte levels since I've been sick so much.  It's not as bad now, but for a while I was getting respiratory infections 1-2 times a month.  I've also been having a lot of  problems with allergy problems and trouble breathing, but tested negative for any allergies and for asthma.  I take allergy medication daily and have to use an inhaler, eye drops, etc without even any sort of diagnosis.  Anyway,  these are the results of the testing my doctor did.  It was kind of wierd because my doctor mentioned doing an immunoglobin infusion if my IGA continues where it's at, but my allergist said my numbers were fine.  

 

 

IGG 895 724 - 1501 mg/dL IGM 230.1 60.0 - 292.0 mg/dL IGA 84.6 83.0 - 336.0 mg/dL

 

 

IGE WBC 7.0 4.0 - 9.8 K/uL RBC 4.73 3.90 - 4.90 M/uL HEMOGLOBIN 12.9 11.8 - 14.8 g/dL HEMATOCRIT 41.1 35.5 - 44.0 % MCV 86.9 82.0 - 99.0 fL MCH 27.3 27.2 - 32.6 pg MCHC 31.4 31.5 - 35.5 % PLATELETS 281 140 - 350 K/uL MPV 10.8 9.3 - 12.4 fL RDW 14.6 11.5 - 14.5 % RDW-STDEV 46.5 37.1 - 48.7 fL NEUTROPHILS 66 45 - 70 % LYMPHOCYTES 26 16 - 45 % MONOCYTES 5 3 - 13 % EOSINOPHILS 3 0 - 7 % BASOPHILS 1 0 - 2 % NEUTROPHIL ABSOLUTE 4.58 1.90 - 7.00 K/uL LYMPHOCYTE ABSOLUTE 1.78 0.70 - 4.50 K/uL MONOCYTE ABSOLUTE 0.37 0.10 - 1.30 K/uL EOSINOPHIL ABSOLUTE 0.22 0.00 - 0.70 K/uL SODIUM 140 135 - 145 mmol/L POTASSIUM 4.0 3.5 - 4.9 mmol/L CHLORIDE CO2 24 22 - 30 mmol/L CALCIUM 9.1 8.6 - 10.2 mg/dL BUN 13 6 - 20 mg/dL CREATININE 0.71 GLUCOSE 103 65 - 99 mg/dL TOTAL PROTEIN 7.0 6.3 - 8.6 g/dL ALBUMIN 4.2 3.4 - 4.8 g/dL BILIRUBIN TOTAL 0.3 0.2 - 1.0 mg/dL ALKALINE PHOSPHATASE 45 35 - 104 U/L 0.51 - 0.95

mg/dL

 

103 96 - 108

mmol/L

 

 

           

[mushroom]

  On 4/15/2013 at 2:12 AM, Becksabec82 said:

No, my doctor didn't do a celiac panel.  She wanted to check my immune function and electrolyte levels since I've been sick so much.  It's not as bad now, but for a while I was getting respiratory infections 1-2 times a month.  I've also been having a lot of  problems with allergy problems and trouble breathing, but tested negative for any allergies and for asthma.  I take allergy medication daily and have to use an inhaler, eye drops, etc without even any sort of diagnosis.  Anyway,  these are the results of the testing my doctor did.  It was kind of wierd because my doctor mentioned doing an immunoglobin infusion if my IGA continues where it's at, but my allergist said my numbers were fine.  

 

 

IGG 895 724 - 1501 mg/dL IGM 230.1 60.0 - 292.0 mg/dL IGA 84.6 83.0 - 336.0 mg/dL

 

 

IGE WBC 7.0 4.0 - 9.8 K/uL RBC 4.73 3.90 - 4.90 M/uL HEMOGLOBIN 12.9 11.8 - 14.8 g/dL HEMATOCRIT 41.1 35.5 - 44.0 % MCV 86.9 82.0 - 99.0 fL MCH 27.3 27.2 - 32.6 pg MCHC 31.4 31.5 - 35.5 % PLATELETS 281 140 - 350 K/uL MPV 10.8 9.3 - 12.4 fL RDW 14.6 11.5 - 14.5 % RDW-STDEV 46.5 37.1 - 48.7 fL NEUTROPHILS 66 45 - 70 % LYMPHOCYTES 26 16 - 45 % MONOCYTES 5 3 - 13 % EOSINOPHILS 3 0 - 7 % BASOPHILS 1 0 - 2 % NEUTROPHIL ABSOLUTE 4.58 1.90 - 7.00 K/uL LYMPHOCYTE ABSOLUTE 1.78 0.70 - 4.50 K/uL MONOCYTE ABSOLUTE 0.37 0.10 - 1.30 K/uL EOSINOPHIL ABSOLUTE 0.22 0.00 - 0.70 K/uL SODIUM 140 135 - 145 mmol/L POTASSIUM 4.0 3.5 - 4.9 mmol/L CHLORIDE CO2 24 22 - 30 mmol/L CALCIUM 9.1 8.6 - 10.2 mg/dL BUN 13 6 - 20 mg/dL CREATININE 0.71 GLUCOSE 103 65 - 99 mg/dL TOTAL PROTEIN 7.0 6.3 - 8.6 g/dL ALBUMIN 4.2 3.4 - 4.8 g/dL BILIRUBIN TOTAL 0.3 0.2 - 1.0 mg/dL ALKALINE PHOSPHATASE 45 35 - 104 U/L 0.51 - 0.95

mg/dL

 

103 96 - 108

mmol/L

 

 

           

 

The values I have bolded are either low normal (as in your IgA and MCH) or below normal (your MCHC.)   I am no expert and am unaware of the potential significance of these values.  You should ask your doctor what would happen if these numbers got worse.   As for the IgA, it is close enough to abnormal to warrant doing both the IgA and IgG versions of all the celiac tests.

 

A common thread amongst longtime celiac sufferers is frequent infections as a child.  I would have at least six respiratory viruses a year, and they would all become secondary bacterial infections in the lungs and last two to three weeks.  As an adult I suffered from chronic UTI infections.  I still get these when I have to take antibiotics, but seldom get a respiratory infection, thank goodness.  Allergies and asthma are also common symptoms among celiacs.

 

What vitamin and mineral levels did you have checked and how low were they?  Common problems in celiac disease persons are Vits. B12, D, folate, iron/ferritin, amongst others.

[Becksabec82]

  On 4/15/2013 at 2:58 AM, mushroom said:

The values I have bolded are either low normal (as in your IgA and MCH) or below normal (your MCHC.)   I am no expert and am unaware of the potential significance of these values.  You should ask your doctor what would happen if these numbers got worse.   As for the IgA, it is close enough to abnormal to warrant doing both the IgA and IgG versions of all the celiac tests.

 

A common thread amongst longtime celiac sufferers is frequent infections as a child.  I would have at least six respiratory viruses a year, and they would all become secondary bacterial infections in the lungs and last two to three weeks.  As an adult I suffered from chronic UTI infections.  I still get these when I have to take antibiotics, but seldom get a respiratory infection, thank goodness.  Allergies and asthma are also common symptoms among celiacs.

 

What vitamin and mineral levels did you have checked and how low were they?  Common problems in celiac disease persons are Vits. B12, D, folate, iron/ferritin, amongst others.

 

It doesn't look she like tested the various vitamin/minerals ... just the electrolytes.  I did become anemic while I was pregnant ... my value was less than 10  but it appears to be more normal now.  I've been taking Iron supplements since though.  

[mushroom]

Do get yourself tested for celiac disease as outlined above.  You were suspected of having it once and had improvement of symptoms but then apparently went back on it after the birth of your child.  Sadly, once a celiac, always a celiac.  If it takes a test result for you to believe this, then do get the testing done.

[Becksabec82]

  On 4/15/2013 at 3:56 AM, mushroom said:

Do get yourself tested for celiac disease as outlined above.  You were suspected of having it once and had improvement of symptoms but then apparently went back on it after the birth of your child.  Sadly, once a celiac, always a celiac.  If it takes a test result for you to believe this, then do get the testing done.

 

I called my primary doctor this morning and she ordered the test.  I'm going tomorrow after to work to get it done.  She also mentioned even if it's negative, its a good idea to resume the gluten-free since it obviously helped in the past.  She also mentioned that gluten-free is recommended for those with IBS-D (which is my main diagnosis)