Could Mom Have Celiac?

[beachbirdie]

I've been struggling to help my mom for two years now, she has unusual blood work and mental ups and downs that act like dementia but her neurologist says not Alzheimer's. And she doesn't have it all the time. She is getting brushed off by some of her docs because she is 84 years old.

She has had persistent mouth ulcers, leg swelling that requires wrapping with elastic bandages. The mouth ulcers were biopsied for malignancy, none found.

Her neurologist says her EEG shows what he called "micro-seizures". She has terrible insomnia, and I think might have sleep apnea, I have seen her stop breathing a few seconds at a time during the night. When she does sleep, it is not good, refreshing sleep, and she then falls asleep a lot during the day. She rarely dreams.

She has monocolonal gammopathy (MGUS), a condition that is precursor to multiple myeloma, but the disease has not yet become active (it is called "smoldering").

She has hypoparathyroidism, but does not have the low calcium that would normally accompany low parathyroid.

She has severe osteoporosis.

I don't have her current blood count, but one done 9 months ago showed low RBC and low lymphocytes.

Low SED rate, low CrP.

She has normal B12, but very low Vitamin D.

Very low normal Free T3 and Free T4, no thyroid antibodies.

Her bloods look like this (I've not included anything that is well in the "normal" range...only the weird ones):

Serum protein: 5.6 (6.1 - 8.3)

Albumin: 2.4 (3.4 - 5.0)

Alkaline Phosphatase (ALP): 167 (35 - 115)

Parathyroid: 5.2 (14.0 - 72.0)

Mom had several celiac tests done last year, but I don't think it included a serum IgA. Results for all others were negative, but with her multiple myeloma and low lymphocytes, might that contribute to a false negative celiac panel? I understand that some disease processes can skew the celiac panel.

I am focusing on celiac because I have one low-risk gene (HLA-DQ2), and my son appears possibly to have had dermatitis herpetiformis. When he went gluten-free all his digestive and skin symptoms cleared; he is not willing to go back on gluten for definitive testing. My daughter has not been tested, but has many symptoms of either intolerance or celiac.

Gliadin Ab, IgA was: <2 (0 - 4)

Tissue Transglutaminase: <2 (0 - 5)

Gliadin Ab, IgG: <2 (0 - 9)

I sure appreciate all thoughts that anyone sends my way. Whatever years mom has left, I'd like to see her gain enough health back that she can enjoy them.

[IrishHeart]

Sounds like a gluten intolerance to me, if not Celiac. Just my opinion.

Your HLA DQ2 subset 2.2 BTW?--accounts for 2% of celiacs. I'm one of them...Nice to meet you! there are likely many more of us. Researchers are still working on it.

I have often wondered how many people with "dementia" are actually in a gluten-induced haze. Gluten is a neurotoxin. Plus, multiple vitamin/mineral deficiencies can impact brain function as well. If I had not had serious neurological symptoms from it myself, I would find it hard to believe, too--but it is very real and devastating. I had horrid insomnia for a long time myself. Gluten is one nasty bugger.

Her osteoporosis can be associated with celiac disease. Does she take Cal/mag/D?

Also, celiac disease is associated with secondary hypoparathyroidism. If it is gluten-related, it may resolve on a gluten-free diet.

My 84- year- old Mom went gluten-free a few months after my DX --she had read all the lit I sent her and because of the genetic factor--and she feels great. She said at her age, putting herself through a biopsy was unnecessary and she knows from my experience that blood tests are unreliable. (I was NEG) While my Mom may not have Celiac, my double HQ2 genes came from both parents and her health history suggests a gluten intolerance. I had her ask the doctor for tests run, specifically for Vit. D def. and her thyroid--because she was uncharacteristically tired and depressed---and sure as shoot, she was low in D and HYPO. I looked like a genius!

Can you get her started on a gluten-free diet? It seems like a good idea and may just help her feel better! Looks like it has helped your son!

Best wishes--and let us know how she is doing.

[beachbirdie]

Sounds like a gluten intolerance to me, if not Celiac. Just my opinion.

Your HLA DQ2 subset 2.2 BTW?--accounts for 2% of celiacs. I'm one of them...Nice to meet you! there are likely many more of us. Researchers are still working on it.

I have often wondered how many people with "dementia" are actually in a gluten-induced haze. Gluten is a neurotoxin. Plus, multiple vitamin/mineral deficiencies can impact brain function as well. If I had not had serious neurological symptoms from it myself, I would find it hard to believe, too--but it is very real and devastating. I had horrid insomnia for a long time myself. Gluten is one nasty bugger.

Her osteoporosis can be associated with celiac disease. Does she take Cal/mag/D?

Also, celiac disease is associated with secondary hypoparathyroidism. If it is gluten-related, it may resolve on a gluten-free diet.

My 84- year- old Mom went gluten-free a few months after my DX --she had read all the lit I sent her and because of the genetic factor--and she feels great. She said at her age, putting herself through a biopsy was unnecessary and she knows from my experience that blood tests are unreliable. (I was NEG) While my Mom may not have Celiac, my double HQ2 genes came from both parents and her health history suggests a gluten intolerance. I had her ask the doctor for tests run, specifically for Vit. D def. and her thyroid--because she was uncharacteristically tired and depressed---and sure as shoot, she was low in D and HYPO. I looked like a genius!

Can you get her started on a gluten-free diet? It seems like a good idea and may just help her feel better! Looks like it has helped your son!

Best wishes--and let us know how she is doing.

Wow! Thanks so much for your comprehensive answer, and for sharing your own experience! Very meaningful, and gives me a lot to work on. Yes, on the DQ 2.2, my doc wouldn't do any further celiac testing because she said my gene was such low risk there was "nothing to look for". I wanted her to do a second tTG because my first one was in the range where Mayo clinic would have done an additional test, but she wouldn't do it. And I hadn't been eating much gluten for months before the test. Ugh. I'm assuming gluten intolerance at the least, and working on grain-free living.

Mom is not taking any supplements right now, though she used to and we've tried to get her going again. I live a state away from her, and it is going to be difficult to manage a special diet from a distance. I will TRY to get her caregivers going. Don't know how successful I'll be. I also think the cal/mag she was using is a poor choice, they are hard-pressed, bargain-priced tablets that probably don't dissolve/absorb well.

I'm thinking of having her tested again through a self-order lab company (directlabs, through a LabCorp facility).

Would the Endomysial Antibody, IgA, tTG, IgA/IgG Immunoglobulin A, and Deamidated Gliadin Antibody IgA/IgG all be sufficient to give a reliable serological answer? I do know that blood testing does not always reveal celiac even if it is present. I don't think her doc will order the tests if I ask, it was like pulling hen's teeth to get thyroid antibodies done, even in the face of a widespread occurrence of autoimmune thyroid in our family.

Thanks again, very much!

Marilyn

[IrishHeart]

Wow! Thanks so much for your comprehensive answer, and for sharing your own experience! Very meaningful, and gives me a lot to work on. Yes, on the DQ 2.2, my doc wouldn't do any further celiac testing because she said my gene was such low risk there was "nothing to look for". I wanted her to do a second tTG because my first one was in the range where Mayo clinic would have done an additional test, but she wouldn't do it. And I hadn't been eating much gluten for months before the test. Ugh. I'm assuming gluten intolerance at the least, and working on grain-free living.

Mom is not taking any supplements right now, though she used to and we've tried to get her going again. I live a state away from her, and it is going to be difficult to manage a special diet from a distance. I will TRY to get her caregivers going. Don't know how successful I'll be. I also think the cal/mag she was using is a poor choice, they are hard-pressed, bargain-priced tablets that probably don't dissolve/absorb well.

I'm thinking of having her tested again through a self-order lab company (directlabs, through a LabCorp facility).

Would the Endomysial Antibody, IgA, tTG, IgA/IgG Immunoglobulin A, and Deamidated Gliadin Antibody IgA/IgG all be sufficient to give a reliable serological answer? I do know that blood testing does not always reveal celiac even if it is present. I don't think her doc will order the tests if I ask, it was like pulling hen's teeth to get thyroid antibodies done, even in the face of a widespread occurrence of autoimmune thyroid in our family.

Thanks again, very much!

Marilyn

(1) Your doctor is wrong. A DQ2 is a DQ2--or so MY doctor tells me--and from what I have read. ANY risk is a risk. I often wonder what doctors would think of the dismissive things they say to patients if THEY were ill every single day of their lives and had a doctor speak to them that way. (geesh, don't get me started on docs! )

And if you had stopped consuming gluten BEFORE your test, of course is was low! Given your DX of Hashimoto's she was very remiss not to test you. However, if you are gluten-free now, it's not going to be accurate.It would probably be wise for you to remain gluten-free. IMHO

(2) I can provide you with a list of menus, food options, etc. to give to the care-givers for your Mom. I wrote it up for family and friends. I posted it recently in this thread:

Print it off and make up a shopping list. Just a thought!

I had to do some care-giving from a state away myself, so I feel for you.

(3)Tell her doctor that your son has DH, the dermatological form of Celiac and that you have one of the Celiac genes (don't get specific--just say DQ2) and you think her symptoms are suggestive of Celiac. Since it is a genetic disease, you would like her tested. Might work!

(4)

The following is usually considered to be a complete celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The last test is a control to make sure that normal amounts of IgA are produced, otherwise the IgG versions of the tests need to be run also.

Good luck and let us know what happens!

IH

[beachbirdie]

(1) Your doctor is wrong. A DQ2 is a DQ2--or so MY doctor tells me--and from what I have read. ANY risk is a risk. I often wonder what doctors would think of the dismissive things they say to patients if THEY were ill every single day of their lives and had a doctor speak to them that way. (geesh, don't get me started on docs! )

And if you had stopped consuming gluten BEFORE your test, of course is was low! Given your DX of Hashimoto's she was very remiss not to test you. However, if you are gluten-free now, it's not going to be accurate.It would probably be wise for you to remain gluten-free. IMHO

That's what I tried to plead while arguing with her nurse. That's why, actually, I've been glutening over the last 3 months and am going to re-test through a patient-directed lab company.

(2) I can provide you with a list of menus, food options, etc. to give to the care-givers for your Mom. I wrote it up for family and friends. I posted it recently in this thread:

Print it off and make up a shopping list. Just a thought!

I had to do some care-giving from a state away myself, so I feel for you.

Thanks a bunch for this! It is so helpful! I WILL use this for mom, hopefully the caregivers will be able to adhere to this and keep mom off the gluten. I am praying they won't give in to her yen for pizza and hamburgers :-(. I am so heartened knowing you have been through almost the same situation...gives me great hope for the months to come.

(3)Tell her doctor that your son has DH, the dermatological form of Celiac and that you have one of the Celiac genes (don't get specific--just say DQ2) and you think her symptoms are suggestive of Celiac. Since it is a genetic disease, you would like her tested. Might work!

If not, I'm going through DirectLabs for sure. It's not all that expensive, $269.

(4)The following is usually considered to be a complete celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The last test is a control to make sure that normal amounts of IgA are produced, otherwise the IgG versions of the tests need to be run also.

Good luck and let us know what happens!

IH

Mom's lab didn't do serum IgA last year, but they did do the IgG versions of AGA and tTG. Those were negative, makes me wonder now if I'm on the right track. Though they didn't do the DGP or EMA. I guess some people will test positive in only one of the antibody types, so probably still worth a thorough look (thinking out loud, sigh).

After I'm able to arrange further testing, I will post an update.

Thanks again, very much, for all your encouragement.

[IrishHeart]

Your Mom CAN have pizza and burgers.

Get Gluten Free Pantry pizza and bread mixes.

People on here say they are pretty good.

Udi's makes a burger roll, I believe?

Keep me posted--and you are very welcome! Hope it helped!

[Lynn-M]

I would recommend getting the genetic test through Enterolab. It is a cheek swab and costs $149 plus $29 2-day shipping. You can order it yourself online. I thought their report was very easy to understand, unlike some I've read here, and they report all their findings. The only drawback is that they only test for HLA-DQB1, not for HLA-DQA1, which makes the test a lot cheaper. They explain why they don't feel it's necessary to test for DQA1 on their site.

The medical director of Enterolab, Dr. Kevin Fine, has gluten intolerance himself, and he's really on the forefront of testing. He seems to be well respected in the patient community, although he's probably too cutting edge for most of the conventional medical community, because they say his stool testing hasn't been validated. The genetic testing is actually done by the American Red Cross.

[beachbirdie]

Your Mom CAN have pizza and burgers.

Get Gluten Free Pantry pizza and bread mixes.

People on here say they are pretty good.

Udi's makes a burger roll, I believe?

Keep me posted--and you are very welcome! Hope it helped!

YES! We have just discovered Udi's wonderful products! I'm thinking we can give her things she loves without too much argument on her part! And, my adult daughter is going to stay with mom for a month to manage the diet. We might go as far as SCD/GAPS but I'm not sure mom will tolerate that early on. Still waiting for a little more information from her doctor, but we're "ready to roll!"

I would recommend getting the genetic test through Enterolab. It is a cheek swab and costs $149 plus $29 2-day shipping. You can order it yourself online. I thought their report was very easy to understand, unlike some I've read here, and they report all their findings. The only drawback is that they only test for HLA-DQB1, not for HLA-DQA1, which makes the test a lot cheaper. They explain why they don't feel it's necessary to test for DQA1 on their site.

The medical director of Enterolab, Dr. Kevin Fine, has gluten intolerance himself, and he's really on the forefront of testing. He seems to be well respected in the patient community, although he's probably too cutting edge for most of the conventional medical community, because they say his stool testing hasn't been validated. The genetic testing is actually done by the American Red Cross.

Mom's hematologist is supposed to have done the genetic test along with deamidated antibodies and I should (finally!) be receiving the results in the mail today. If he failed, I can now afford to get them done without her doctors. Thankfully, we will be spending the next month with her and making sure her diet is changed.

Thanks to both of you for your replies; somehow I missed them because I did not know how to find my way back through "my content"!

[beachbirdie]

The following is usually considered to be a complete celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The last test is a control to make sure that normal amounts of IgA are produced, otherwise the IgG versions of the tests need to be run also.

Good luck and let us know what happens!

IH

My mom's doc finally sent me the results, I posted into a new topic HERE.

But, in case you are still following, and don't want to go to the new topic here's the short version.

Doc did some DGP and EMA, did some IgG and IgA. In an unusual move, he also tested total serum IgG. My mom came out LOW.

Would this affect her other celiac numbers?

Is it actually possible she could still have celiac, even though the other tests were all negative?

Ugh!

[Bubba's Mom]

I admit I don't understand all of the blood tests, but I know you can get false negatives.

I had negative blood work but had been gluten light due to severe nausea for quite a while, when tested. I was scoped and had real bad intestinal damage. As time has gone on, I'm getting much stronger reactions to minute cc. I am a DQ2.2 as well. I've read that those with DQ2.2 are more rare, but tend to have stronger reactions and symptoms.

With your Mom having deficiencies, parathyroid issues, osteoporosis, mini seizures, etc. I'd say just have her go gluten-free to see if it improves her health? If you can get her completely gluten-free she may see improvement with things she didn't realize were symptoms?

[beachbirdie]

I admit I don't understand all of the blood tests, but I know you can get false negatives.

I had negative blood work but had been gluten light due to severe nausea for quite a while, when tested. I was scoped and had real bad intestinal damage. As time has gone on, I'm getting much stronger reactions to minute cc. I am a DQ2.2 as well. I've read that those with DQ2.2 are more rare, but tend to have stronger reactions and symptoms.

With your Mom having deficiencies, parathyroid issues, osteoporosis, mini seizures, etc. I'd say just have her go gluten-free to see if it improves her health? If you can get her completely gluten-free she may see improvement with things she didn't realize were symptoms?

I'm starting to wonder now if CVID (Common Variable Immunodeficiency) is less rare than they think, and wonder if that might contribute to the number of people who are told they don't have celiac, but don't respond well to the diet. Did they happen to test your total serum IgG?

CVID shows damage to villi that is identical to celiac, but is NOT celiac and does not respond to gluten-free eating.

We are going to base our attempt on the hope that mom has celiac (darn that doc for not doing genes, but bless him for doing total IgG!) and start gluten-free but move quickly to GAPS/SCD.

I'm so sad that all these years have been wasted for mom, and I'm praying hard we can get her some really GOOD years to make up for it.

I'm sorry that you are one of the rare DQ2.2 who do have the disease, but it goes to show you they don't know everything!

I'm going to get tested tomorrow to find out if I have changed since my doc tested me last fall. I was off gluten at the time, so I was a little upset with her for springing it on me.

[Bubba's Mom]

I'm starting to wonder now if CVID (Common Variable Immunodeficiency) is less rare than they think, and wonder if that might contribute to the number of people who are told they don't have celiac, but don't respond well to the diet. Did they happen to test your total serum IgG?

CVID shows damage to villi that is identical to celiac, but is NOT celiac and does not respond to gluten-free eating.

We are going to base our attempt on the hope that mom has celiac (darn that doc for not doing genes, but bless him for doing total IgG!) and start gluten-free but move quickly to GAPS/SCD.

I'm so sad that all these years have been wasted for mom, and I'm praying hard we can get her some really GOOD years to make up for it.

I'm sorry that you are one of the rare DQ2.2 who do have the disease, but it goes to show you they don't know everything!

I'm going to get tested tomorrow to find out if I have changed since my doc tested me last fall. I was off gluten at the time, so I was a little upset with her for springing it on me.

I hadn't heard of CVID before, so I looked it up. In the past I had a rough time with repeated Pneumonia. I spent months in the hospital. When I decided to go to an allergist 3 years ago, to start allergy shots he did some blood work. He said I didn't have Pneumonia antibodies, which I sure should have!

I also had had a vaccine for it. He had me get another vaccine and left it at that.

Now I'm wondering if he ever tested my IGG level?

In my case I think it bears checking out? I'm really glad you posted about this.

Thanks so much for sharing you and your Mom's test results and stories. From the reading I've done so far, it looks like your Mom would be wise to go gluten-free? Also, they do blood infusion treatments for CVID. Have they mentioned doing any of that with your Mom?

[beachbirdie]

I hadn't heard of CVID before, so I looked it up. In the past I had a rough time with repeated Pneumonia. I spent months in the hospital. When I decided to go to an allergist 3 years ago, to start allergy shots he did some blood work. He said I didn't have Pneumonia antibodies, which I sure should have!

I also had had a vaccine for it. He had me get another vaccine and left it at that.

Now I'm wondering if he ever tested my IGG level?

In my case I think it bears checking out? I'm really glad you posted about this.

Thanks so much for sharing you and your Mom's test results and stories. From the reading I've done so far, it looks like your Mom would be wise to go gluten-free? Also, they do blood infusion treatments for CVID. Have they mentioned doing any of that with your Mom?

I hope you get your other issues sorted out! If you actually have the CVID, the pneumonia shot won't do you any good! It would be worth having them explore that further for you. It's rare, so they won't likely think of it on their own. I hope they'll do your IgG!

I've not pursued infusion for mom, I just discovered the latest information this week and have a lot of information to sort out. I probably need to talk a little more with the hematologist as well. Mom also has multiple myeloma (not active yet, but "smoldering") which can cause the dampening of immunoglobulins, so I need to find out how her doctor is differentiating between something like CVID and the myeloma.

Mom is definitely going gluten free, but we have to wait a few days to get down where she lives. I'm really anxious to get going on the changes and praying she really has celiac that doesn't show on blood work. I decided not to push for a biopsy, not sure how far I'd get nor would it make a difference in how we're going to manage her diet.

Good luck to you...let me know what you find out about your other immune things! I would be wonderful if mom's struggle is somehow helpful to you!

[Bubba's Mom]

I hope you get your other issues sorted out! If you actually have the CVID, the pneumonia shot won't do you any good! It would be worth having them explore that further for you. It's rare, so they won't likely think of it on their own. I hope they'll do your IgG!

I've not pursued infusion for mom, I just discovered the latest information this week and have a lot of information to sort out. I probably need to talk a little more with the hematologist as well. Mom also has multiple myeloma (not active yet, but "smoldering") which can cause the dampening of immunoglobulins, so I need to find out how her doctor is differentiating between something like CVID and the myeloma.

Mom is definitely going gluten free, but we have to wait a few days to get down where she lives. I'm really anxious to get going on the changes and praying she really has celiac that doesn't show on blood work. I decided not to push for a biopsy, not sure how far I'd get nor would it make a difference in how we're going to manage her diet.

Good luck to you...let me know what you find out about your other immune things! I would be wonderful if mom's struggle is somehow helpful to you!

If things are messing up your Mom's readings, her Celiac test could very well be false negative? It can't hurt to try her on the diet? The scope may not show anything, and it would be one more stressful thing she'd have to go through IMO?

From the reading I've done about wheat and gluten it seems like it isn't good for anybody? The zonulin it activates lets things leak out of the GI tract into the blood stream. Not good with everything your Mom is already dealing with, especially the brain issues?

Soo..Today I went to the allergist that did my testing in 2009. I went in back then, to start getting allergy shots because my allergies were turning into frequent asthma attacks. He ran the expected skin prick tests, along with blood work. It's the blood work that showed my pneumonia antibodies were off. I got an additional vaccine and he repeated that portion of the blood test and called it good.

I asked if I could get copies of the blood work he ran back then, so I'd know if my IGG levels were tested.

It shows my IGG subclass 1 was low. IGG sunclasses 2 and 3 were in the middle of normal range and IGG subclass 4 were low normal.

Now I have to do some looking to see what means?

When I looked into CVID it mentioned pneumonia as one of the things that would recur with low IGG numbers. It also mentions that it can mimic Celiac disease, so it caught my attention.

Even after getting the second vaccine my numbers for each strain of S Pneumoniae were way off normal.

I don't know if any of this means anything, but I think it bears looking into because I was DXed Celiac without positive blood work and I haven't healed on a gluten-free diet?

[beachbirdie]

If things are messing up your Mom's readings, her Celiac test could very well be false negative? It can't hurt to try her on the diet? The scope may not show anything, and it would be one more stressful thing she'd have to go through IMO?

From the reading I've done about wheat and gluten it seems like it isn't good for anybody? The zonulin it activates lets things leak out of the GI tract into the blood stream. Not good with everything your Mom is already dealing with, especially the brain issues?

I am betting (and hoping) that mom's bloods *are* false negative, I agree that scoping will be just too much for her. We're taking her gluten free, and if she'll tolerate it we're putting her on GAPS/SCD. I agree there too, I think gluten is a dangerous thing! I am hoping that the diet will also bring her multiple myeloma markers down. I just read her hematologist's notes today, he made it sound like he only did the celiac tests to humor me and not because he thought she might have celiac. I guess it's why I never heard back and had to ASK for the labs.

Soo..Today I went to the allergist that did my testing in 2009. I went in back then, to start getting allergy shots because my allergies were turning into frequent asthma attacks. He ran the expected skin prick tests, along with blood work. It's the blood work that showed my pneumonia antibodies were off. I got an additional vaccine and he repeated that portion of the blood test and called it good.

I asked if I could get copies of the blood work he ran back then, so I'd know if my IGG levels were tested.

It shows my IGG subclass 1 was low. IGG sunclasses 2 and 3 were in the middle of normal range and IGG subclass 4 were low normal.

Now I have to do some looking to see what means?

Each sub-class has a specific function, for example subtype 3 is related to respiratory infection (not that I'm an expert, but I've been reading some!). Open Original Shared Link looks kind of wonky, but from other sites I went to, it seems the description of IgG subtypes is good, and easiest to read. Your subclass 1 is the major defender, and 3 is respiratory. But 1 is the first line of defense and the deficiency could very well be allowing the pneumonia.

When I looked into CVID it mentioned pneumonia as one of the things that would recur with low IGG numbers. It also mentions that it can mimic Celiac disease, so it caught my attention.

Even after getting the second vaccine my numbers for each strain of S Pneumoniae were way off normal.

I don't know if any of this means anything, but I think it bears looking into because I was DXed Celiac without positive blood work and I haven't healed on a gluten-free diet?

Yes, I sure think it is worth checking into a bit more. Is your doctor pretty open to looking for the obscure? One of the ways they test for CVID is to give a pneumonia shot, then test antibodies a couple of weeks later. If the antibodies aren't there, it makes a good case for CVID.

Sure hope you get something definitive nailed down! It's always nice when we can get complete answers!

[pricklypear1971]

Was your mother on steroids of any type? Oral or topical.

Steroids are used to suppress the immune system - so they could have lowered her test numbers.

[beachbirdie]

Was your mother on steroids of any type? Oral or topical.

Steroids are used to suppress the immune system - so they could have lowered her test numbers.

No, she doesn't take medication of any kind.