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Hypogammaglobulinemia - Anyone Else Been Diagnosed With This?


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9 replies to this topic

#1 Lynayah

 
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Posted 24 November 2009 - 05:34 PM

Hypogammaglobulinemia - Has anyone else out there ever been diagnosed with this?

I took shots for this for years in my childhood and teen years. I was told years back I was misdiagnosed.

Now, as I look back, I wonder if the diagnosis was due to problems I was having with gluten.

Any thoughts out there?
  • 0
Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

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#2 yolo

 
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Posted 24 November 2009 - 08:28 PM

I was given gamma globulin as an infant. I had pneumonia at age 4 months plus stopped growing. Fortunately I was put in isolation and the doctor figured out it was my diet. He was originally from the Mayo clinic so knew something about celiac sprue--which I was then diagnosed with. Unfortunately I was put back on gluten at age 4 (we had already moved twice by then). I kept growing so they thought I was OK--however my health deteriorated rapidly... Nevertheless I think the gammaglobulin made me more resistant to certain diseases than I otherwise would have been--I never got the mumps or strep throat for instance... so I don't think it hurt me to get the gamma globulin, it probably helped instead.
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#3 Lynayah

 
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Posted 25 November 2009 - 05:09 PM

I was given gamma globulin as an infant. I had pneumonia at age 4 months plus stopped growing. Fortunately I was put in isolation and the doctor figured out it was my diet. He was originally from the Mayo clinic so knew something about celiac sprue--which I was then diagnosed with. Unfortunately I was put back on gluten at age 4 (we had already moved twice by then). I kept growing so they thought I was OK--however my health deteriorated rapidly... Nevertheless I think the gammaglobulin made me more resistant to certain diseases than I otherwise would have been--I never got the mumps or strep throat for instance... so I don't think it hurt me to get the gamma globulin, it probably helped instead.


Thanks for the reponse, Yolo. Were you diagnosed with Hypogammaglobulinemia, or were you put on the shots as a preventative measure against disease? Thank you, thank you. I hope more will respond to this.
  • 0
Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

#4 Lynayah

 
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Posted 26 November 2009 - 05:39 PM

Thanks for the reponse, Yolo. Were you diagnosed with Hypogammaglobulinemia, or were you put on the shots as a preventative measure against disease? Thank you, thank you. I hope more will respond to this.



I want to add that I missed most of second grade to to my having reoccuring infections -- had to have a bedside teacher.

I am on a quest to find a link between this and gluten. I know there may very well be one.
  • 0
Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

#5 yolo

 
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Posted 26 November 2009 - 06:55 PM

Thanks for the reponse, Yolo. Were you diagnosed with Hypogammaglobulinemia, or were you put on the shots as a preventative measure against disease? Thank you, thank you. I hope more will respond to this.



I honestly don't know. Perhaps I should ask my Mom and see if she remembers. My feeling is that they noticed my immune system was way down. Interestingly this was after the first "Green Run" in Washington state. They did a full release of radiation from the Hanford nuclear reactor into the atmosphere to see what would happen. The wind shifted and it went over Walla Walla (where I lived) as well as into Idaho. I am betting I wasn't the only infant that was adversely affected at the time. The pneumonia I had was considered serious enough for me to be in the hospital and put into isolation. However I also (as said) developed celiac disease as a result of being introduced to grains then too... and stopped growing.

Previously I was supposed to have been very healthy... In any case, I did not have to get more gamma globulin shots after I left the hospital. The change of diet seemed to be sufficient to cure me though for a time that winter I still was ill. The story goes that my mother used to keep me in the kitchen near the wood stove so I would stay warm. She also frequently used a kind of towel steam tent to help clear the mucous out of my nose and throat and used a syringe to clean out the guck. After I was reintroduced to grains at age 4, I got the chronic mucous back by age 5. It stayed with me until I went off all trace gluten--though going off most gluten by the time I was in my thirties greatly helped.
  • 0
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#6 Lynayah

 
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Posted 27 November 2009 - 05:20 PM

Yolo,

Coincidentally, I also had pneumonia as a baby -- I was not 4 months old, but I was still in a crib. I know because my mother was a nurse, and she somehow talked the doctor into allowing her to set up an oxygen tent over the crib -- promising to watch me carefully, so I wouldn't have to go to the hospital. This story was told many times throughout the years.

I can remember very far back to early childhood, and I also have a memory of being in the tent, in the crib.

For the record: This was back in the 1950's.
  • 0
Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

#7 BlueTaelon

 
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Posted 27 November 2009 - 06:36 PM

Shots? You poor thing! They haven't done those in years, I hear they were very painful. Both my kids have CVID and 1 receives Ig therapy. Now you have a choice of monthly IV which is done over several hours or weekly sub-q therapy at home. I wouldn't credit it for any long term benefit the Ig only lasts about 21 days in the body then you need another infusion.
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#8 yolo

 
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Posted 27 November 2009 - 08:39 PM

For me it was still 1949...

Glad to hear now they don't do shots.

Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#9 worried grandma

 
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Posted 05 October 2012 - 09:24 AM

Hypogammaglobulinemia - Has anyone else out there ever been diagnosed with this?

I took shots for this for years in my childhood and teen years. I was told years back I was misdiagnosed.

Now, as I look back, I wonder if the diagnosis was due to problems I was having with gluten.

Any thoughts out there?


My grandson who is 10 yrs old now has been diagnosed with this and has been in treatment for the past 3-4 years. I can remember the treatment name but he gets it once a week and they stick 3 or 4 little needles into his stomach and the medicine is slowly administered. It creates raised welts where the medicine is and then his body slowly absorbs this. He is having problems with migraines - have you had this?
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#10 psawyer

 
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Posted 05 October 2012 - 09:31 AM

This topic is almost three years old. The original poster, Lynayah, has not been on here in about six months.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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