Stuck Without Diagnosis

[Reena]

Hello all,

 

I have to say up-front a big thank you to all of you dedicated and sincere people from whom I have learned a lot over the past few weeks. I decided it is time to share my story and to ask what you may think about where I might go from here. Gluten was not even on my radar a few months ago, but now learning all I can about celiac disease, NCGI and a gluten-free diet has become a major focus of my life.  (Trying to make a long story short, but apologize for lengh)

 

I am 59 years old, have been chronically constipated since an infant and as long as I can remember have suffered bloating, gas, pain, and severe abdominal distension especially after eating.  As a child underwent various doctor examinations and barium x-rays, but nothing was discovered about the cause.  Doctors made some dietary recommendations, gave me all sorts of nasty potions which never helped, and it just became my "normal' as far as I knew.  I also suffered from chronic ear infections (always left ear), sinus infections, and sore throats.  About 15 years ago I also began getting migraine headaches (left side) which always began with more severe ear pain, inflammation in head and face, and severe pain behind eyes, and had them an average of 1-3 times per week.

 

I was always on the lookout for what foods might trigger the migraines, and eliminating something temporarily from my diet to see if it had an effect.  All to no avail until about 5 years ago when I stumbled upon corn syrup as a culprit.  Since eliminating that (and also limiting consumption of corn in general) the severity of the migraines lessened somewhat, but not the frequency or the manner in which they appeared.  So, there was clearly something else.  I have also avoided milk products for most of my adult life, but was not convinced that it was a lactose mediated reaction (taking lactase did not seem to help the greater abdominal discomfort or headaches after dairy consumption.).  I also sub-consciously limited consumption of grain products most of the time, but did not avoid them completely.

 

This last summer I had a long commute and it was easier to bring lunches and snacks consisting of sandwiches, crackers, and wheat containing snack foods in addition to fruits, fish, etc..  This was way more gluten than I usually consumed, and I started having strange things happen to me.  I stumbled and had lots of falls, including one where I cracked a rib.  I thought I was just walking too fast and slowed down.  I noticed running into doorframes and bruising my arms.  I am very near-sighted, so just thought my glasses needed updating.  I burned myself a few times because i would be cooking and have a strange, not painful sensation on a finger, until it finally started to hurt and I realized I was touching a hot pan; or once was pouring boiling water for tea (wihout glasses on) and wondered about the strange sensation of water pouring over my finger, until it finally hurt and realized that I had been pouring the boiling water over my finger.  This was disconcerting, but since I was feeling so exhausted all the time, and my head was in a fog, I had no strength to think of seeing a doctor about something that I hoped was just a passing thing.  I also realized that every time I would be walking with a friend, I kept bumping into them, even though I tried so hard to walk straight.  It was embarrasing.  My sinuses were burning, throat was sore, experienced some urinary incontinence (leakage) and feeling like I had a UTI, although with no fever.  I was nauseous often and even had bouts of diarrhea in the mornings which made me anxious on the over-an-hour bus ride. My head was constantly hurting and inflammed (was actually swollen, as determined by glasses fitting tighter and hurting face), and the migraines were more frequent.   Finallly, I broke out with a carpeting of red rash from my neck to bottom of torso, and petechial rash from thighs to feet. 

 

At this point I decided to change what I was eating, and thus cut out the bread and crackers (still not really thinking about gluten), except for 2 slices of bread on Shabbat, once a week.  However, since I was also getting cramps and a creepy-crawly sensation in my legs, I thought that I was lacking calcium and started eating yogurt.  The rash went away after about 2 weeks, my throat was less sore and the inflammation in head and ear not as intense.  I also noticed that on Sunday or Monday (after eating bread on Friday night & Saturday) I would always get my typical migraines.  Now, I started thinking gluten.  So, after 4  months of once-a-week bread, I stopped all gluten (as far as I knew how to).  It was amazing.  No migraine for a week and the ear & sinus pain and inflammation in head were greatly lessened.  I started looking up gluten sensitivities and realized that I should get tested soon, since I had been off gluten for a week (I didn't know about the effect of the 4 months of "gluten-light"). 

 

My doctor discounted what I had to say about my abdominal history because I usually had constipation instead of diarrhea. She had never heard of a link to migraines. I did not mention the neurological issues, because I did not have any idea then that they could be gluten related.  To appease me she did order the blood test.   It was negative:

 

anti-TTG+DGP (IgA+IgG)       0.61 U/ml  (0 - 40)

 

But I did find that I was:

 

vitamin D deficient                    22 ng/ml  (up from 20 ng/ml after taking 1000 U/day Vit. D supplement for 2 years),

vitamin B-12 deficient              282 pg/ml  (down from 492 pg/ml 2 years ago)   

high normal fasting glucose     99 mg/dl   (65 - 100)

high LDL                                  138  (60 - 130)

high total cholesterol                211  (120 - 200)

 

No other nutrients were tested for, and the high cholesterols were despite my ratios (with HDL and triglyercerides) being really almost ideal.  My diet is usually very heart healthy - no oils except for olive oil, high in fruits & veggies, low in sugar, etc. Not overweight and in pretty good shape.

 

The doctor called and said "well, you definitely don't have Celiac".  She gave me a  referral to a nutritionist to consult on the high chlolesterol and a Rx for vitamin B12, and told to increase the vit D to 1500 U/day (the nutritionist said 2000 & sometimes I take 4000).

 

I am now gluten-free, corn-free, dairy-free for 7 weeks (no processed food except for rice cakes & brown rice cereal).  Only one migraine that whole time.  Almost free of inflammation in head, ear pain, sinus pain and sore throat.  I am not walking into people or door frames, the feeling has come back in my fingers. Unless I have eaten something questionable I have no reflux or nausea, no panic on the long bus ride, much less intestinal gas, no pain, bloating, and distension in abdomen.  I am more energetic, my steps feel lighter, and I don't get as winded when walking. Oh and I also have fuzzy new hair growth in a bald spot on my head that started about 4 years ago.

 

I have since learned that my adult daughter, who has always had the same abdominal issues, but no neurological ones,  has been diagnosed with Celiac.  Other curiosities - Always had infertility issues, with only 2 pregnancies, one was my long-awaited daughter, and, after 12 years, one which ended in miscarriage.  Also, was not able to be vaccinated successfully against Hepatitis B.

 

So, the question... I thought I probably have NCGI because of the negative blood test, although my doctor knows nothing of that and looked at me like I was from another planet when I mentioned it.  But, my nutritionist thinks that the sensitivity I apparently have to cross-contamination is more indicative of Celiac.  I now realize that my very low level of gluten for the months prior to the blood test could have resulted in a negative test, even with Celiac.  Can NCGI also cause the neurological symptoms I was experiencing, the nutritional deficiencies, hair loss, the infertility, etc.?  Is it adviseable to just continue on a strict gluten-free diet, even though I have no diagnosis to cause the medical system to take the dietary need into account in any future circumstances?  Or would it be worth risking further damage to do a gluten challenge to know which it is? I would think it would require a leave from work, since I don't think I could function if had symptoms like this summer for 8 weeks.  Would you suggest genetic testing (I'm sure I would have to do it outside of the health system)?

 

My nutritionist will be ordering another blood test for cholesterol levels in 1 month.  What other nutrients should I also ask to be tested for?  (I do not live in the US and the health system has rigid guidelines, so might or might not be successful in getting them.)

 

Thank you so much.

 

 

 

[Marilyn R]

Hi Reena, and welcome to the forum.

 

IMO, it would not be worth it for you to do a gluten challenge.  Why go through that when you have already had success with going gluten-free? Fertility problems and migraines are linked with celiac disease or intolerance, and so are a number of other things you mention.  I can't address the blood tests because I'm not qualified.  But I see a few doctors and they all agree the blood tests are not reliable at best.  

 

I don't know if that's good advise or not, just saying what I personally think.  I was not willing to undergo a gluten challenge after my blood tests came back negative.  I really couldn't justify the risk/reward benefit.  Validaton?  I already knew, and it was a long, hard road to get there, just as it has been for you.

 

Good luck to you,

M

[mamaw]

welcome

It  doesn't  sound like  your  doctor is  very  knowledgeable about  gluten. Could  you seek out  another  doc? Many just  never learned  anything  about  this  in med  school your  doc  is not  singled  out  there  are  thousands  of  them!

I've  been  celiac for  eleven  years  now along  with  daughter  & two grandkids.... I  think  for  children it  is  VERY important  to get  proper testing because  of  school. On the  other  hand  adults  can  make  choices  that  are  best  for them, you  know  your body better than any  other  person.....Do  you  really need  a  gold  stamp of approval from  your  /a  doctor? heck, I've  been dx'd  by  many  doctors  &  they  turned  out  not to be  true or  correct....

My  suggestion  is  do  what  makes  you function better, if  it is  cutting  out  gluten , soy,  corn  or  whatever  so be it....You are  the one  who  prepares  what  you put in  your  mouth...along  with  gluten  I  know  I react  badly to some  highly  touted  healthy  foods.  For  some  they  are  mega  healthy  for  me  not  at  all... I  avoid like  the plague....

SO  I  guess  you  will need to decide  if  you want to feel  better  or  chase  down a doc who  will confirm  a  d'xs for you....

 

Sorry   I forgot to re-read  your  message  but  one needs to be  consuming  lots  of gluten  for  accurate  blood  test.... Did  you do a  biopsy?

I  think you are  on the  right  tract!!!!

[powerofpositivethinking]

Hi Reena, and welcome!

 

I'm a little short on time, but here's what I can add for now.

 

First off, am I correct in thinking that you were off gluten 4 months prior to these blood tests?  If so, the results may be invalid...more on that later.

 

it looks like the newer combo of the TTG IgA and DGP IgG was performed, but I'm a little confused because I believe there should be two different results listed.  I'm thinking the first one that you have listed is valid for the TTG IgA test.  Is there a second listed value for the DGP IgG test?  Also was your total IgA level tested?  Without having that control test to know if you produce an adequate level of IgA, the TTG IgA results are useless. 

 

See if you can get the DGP IgG results.  I have been strictly gluten free since March, but finally just fell into the weak positive range for my testing, so if you can get that test run, it's possible it may still be elevated.  Peoples antibody levels fall at different rates. 

 

In addition check out this link:  Open Original Shared Link

 

I took 50000 ius of Vitamin D once a week to bring up my levels, so I would ask your doctor about that.  Currently I'm taking a huge amount of Vitamin K to attempt to bring that level up.  Do you bruise easily or have cuts that take a long time to heal?  I thought because of the bruising I was going to be anemic, but it turns out it is a Vitamin K deficiency instead.

 

Here is a list of tests to request: 

Vitamins A, B, D, E, K

Iron and Ferritin

Copper

Zinc

CBC (Complete Blood Count)

CMP (Complete Metabolic Panel)

Magnesium

Thyroid with TSH and Free T3 and Free T4

 

Constipation was one of my main symptoms, and I never presented with the big D.

                                                   

I am sure others will be along soon to give input

 

anti-TTG+DGP (IgA+IgG)       0.61 U/ml  (0 - 40)

 

But I did find that I was:

 

vitamin D deficient                    22 ng/ml  (up from 20 ng/ml after taking 1000 U/day Vit. D supplement for 2 years),

vitamin B-12 deficient              282 pg/ml  (down from 492 pg/ml 2 years ago)   

high normal fasting glucose     99 mg/dl   (65 - 100)

high LDL                                  138  (60 - 130)

high total cholesterol                211  (120 - 200)

 

[Reena]

Thank you Marilyn R and mamaw for your support.  You are so right, it is not necessary to have a medical confirmation to be able to do what is the best for one's health.  I have never been that keen on the established medical philosophy anyway.  The only thing I wonder about is having them take seriously the need for gluten-free medications, etc. in the future, since nothing would be documented in the medical records. 

 

Mamaw, a biopsy was not even considered, since it was determined that I  "definitely" didn't have Celiac due to the negative blood test.

 

I am happy that my nutritionist with the health organization (sort of like an HMO in the US) believes that I am doing the right thing and she is supportive.

[Reena]

 

Hi Reena, and welcome!

 

I'm a little short on time, but here's what I can add for now.

 

First off, am I correct in thinking that you were off gluten 4 months prior to these blood tests?  If so, the results may be invalid...more on that later.

 

it looks like the newer combo of the TTG IgA and DGP IgG was performed, but I'm a little confused because I believe there should be two different results listed.  I'm thinking the first one that you have listed is valid for the TTG IgA test.  Is there a second listed value for the DGP IgG test?  Also was your total IgA level tested?  Without having that control test to know if you produce an adequate level of IgA, the TTG IgA results are useless. 

 

See if you can get the DGP IgG results.  I have been strictly gluten free since March, but finally just fell into the weak positive range for my testing, so if you can get that test run, it's possible it may still be elevated.  Peoples antibody levels fall at different rates. 

 

In addition check out this link:  Open Original Shared Link

 

I took 50000 ius of Vitamin D once a week to bring up my levels, so I would ask your doctor about that.  Currently I'm taking a huge amount of Vitamin K to attempt to bring that level up.  Do you bruise easily or have cuts that take a long time to heal?  I thought because of the bruising I was going to be anemic, but it turns out it is a Vitamin K deficiency instead.

 

Here is a list of tests to request: 

Vitamins A, B, D, E, K

Iron and Ferritin

Copper

Zinc

CBC (Complete Blood Count)

CMP (Complete Metabolic Panel)

Magnesium

Thyroid with TSH and Free T3 and Free T4

 

Constipation was one of my main symptoms, and I never presented with the big D.

                                                   

I am sure others will be along soon to give input

 

anti-TTG+DGP (IgA+IgG)       0.61 U/ml  (0 - 40)

 

But I did find that I was:

 

vitamin D deficient                    22 ng/ml  (up from 20 ng/ml after taking 1000 U/day Vit. D supplement for 2 years),

vitamin B-12 deficient              282 pg/ml  (down from 492 pg/ml 2 years ago)   

high normal fasting glucose     99 mg/dl   (65 - 100)

high LDL                                  138  (60 - 130)

high total cholesterol                211  (120 - 200)

 

 

 

Hi powerofpositivethinking.  Yes, you are right that I was almost completely off of gluten for 4 months before the blood test  (consuming only few bites of bread once a week). 

 

I had the same confusion as you as to what type of test this was.  It was listed on the blood work results exactly as I have noted it.

 

anti-TTG+DGP (IgA+IgG)       0.61 U/ml  (0 - 40)

 

It seems to be the standard test done here (it is called "Celiac Antibody Screening".)  With only one result, I am thinking it must be done as one test using a mixture of antigens (TTG and DGP) and detecting a mixture of both anti-IgG and anti-IgA. So, even with a positive result one would not know which particular antigen was reacted to and what class of antibody was made.  An IgA level was not done, perhaps because they include both IgA and IgG in the panel.

 

Thank you for the list of tests desired to do, as well as the link.  I will bring this info with me.  I do bruise easily, and cuts stay around for a little while (don't know what would be normal).  I was on the low end of normal for both hematocrit and hemoglobin, but ferritin and iron were not done.  TSH was tested and it was 1.42 miu/L (range 0.34 - 5.60), but free T3 and T4 were not ordered.

[anand]

U can do gene test for celiac susceptibility .....it is not like a usual gene test... A negative means almost impossible to have celiac, while a positive means u have the gene requirements to develop the disease but it is not necessary u have developed it...

More here,

Open Original Shared Link

U can do it urself at

Open Original Shared Link

Hope this helps......

[cyclinglady]

Beside Celiac-related woes, you should research your fasting blood glucose.  It seems high -- just on the border from pre-diabetes and sugar spikes can cause hand and feet numbness, etc.    So, watch your carb/sugar intake as that tends to increase when you go gluten free (gluten-free flours, rice, etc.)  Chances are your docs will take the "wait and see" approach and that's not the way to go!  

[bartfull]

Celiac runs in families, and if your daughter definitely has celiac, my opinion is that you most likely do too. My mother was diagnosed with it, and based on resolution of my symptoms on the gluten-free diet, my doctor has given me the diagnosis. (I have no insurance and there is no way I would ever put myself through a gluten challenge anyway.)

 

So go to the coping section and read the Newbie 101 thread. You will learn so much. Tell your daughter to read it too. Then feel free to ask lots of questions. We're here to help.

[Reena]

U can do gene test for celiac susceptibility .....

 

Thank you for suggesting this.  I have been thinking about it and I think genetic testing is a good option for me.  If I do have an HLA type that is associated with Celiac, then along with my response on the diet I would be convinced enough to diagnose myself. If the test is negative, then a diagnosis by conventional tests I think would be less likely, and not worth the gluten challenge.  I would still know that I feel much better with a strict gluten-free diet and that is incentive enough to maintain it.

 

 

Beside Celiac-related woes, you should research your fasting blood glucose.  It seems high -- just on the border from pre-diabetes and sugar spikes can cause hand and feet numbness, etc.    So, watch your carb/sugar intake as that tends to increase when you go gluten free (gluten-free flours, rice, etc.)  Chances are your docs will take the "wait and see" approach and that's not the way to go!  

 

Thanks for letting me know about this.  I am due for the next blood test soon to check the lipids and glucose, along with nutritional deficiencies.  I am hoping to see improvement from the 3 months gluten-free (by then).  If not, I will want to explore further how to keep the glucose within range.

 

Celiac runs in families, and if your daughter definitely has celiac, my opinion is that you most likely do too. My mother was diagnosed with it, and based on resolution of my symptoms on the gluten-free diet, my doctor has given me the diagnosis. (I have no insurance and there is no way I would ever put myself through a gluten challenge anyway.)

 

So go to the coping section and read the Newbie 101 thread. You will learn so much. Tell your daughter to read it too. Then feel free to ask lots of questions. We're here to help.

 

Thank you!