1 Year Followup Bloodword - Input Needed

[alevoy18]

Hi all,

I was diagnosed with Celiac Disease by strong positive tTG blood test and biopsy (Marsh 3B) in November 2009. At first I started to improve, but over the last few months I have not been feeling so well. My GI sent me for a battery of tests to see what my levels were, but to his surprise, everything came back fairly normal (his words). He also sent me for a bone density scan and small bowel series, which also came back normal. He feels it could not be celiac causing the issues because my levels do not show malnutrion or malabsorption. My symptoms are fatigue, headaches and diarrhea. Also my neurologist diagnosed me with autonomic nerve damage back in November 2009 caused by Celiac Disease because I had a pacemaker put in for low heart rate and my BP constantly drops. These signs of autonomic problems she said were likely due to undiagnosed Celiac Disease. Now my GI doctor questions why there is autonomic problems when my levels are good, but everywhere you read it says no matter if your levels improve, the damage may stay so I just have ignored him. I guess I'm just frustrated because he is sending me for a stool check for parasites to make sure I don't have a bowel infection that mimiced Celiac. I have had 3 antibody tests all come back postive, I doubt I have a parasite, so it's frustrating. Anyways, here are my latest blood tests he ran. I have highlighted abnormal results in red and borderline in orange.

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CELIAC

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Anti-tTG - 56 (ref range < 20)

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VITAMINS/NUTRITION

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Vitamin D - 75 (ref range 75 - 200)

ZINC - 11.5 (ref range 11.5 - 19)

Albumin - 46.1 (ref range 33 - 45)

Vitamin B12 - 205 (ref range 140 - 1000)

Ferritin - 60 (ref range 30 - 200)

Vitamin A - 1.9 (ref range 1.3 - 2.8)

Magnesium - 0.92 (ref range 0.65 - 1.05)

Calcium - 2.41 (ref range 2.15 - 2.60)

Phosphate - 1.13 (ref range 0.90 - 1.52)

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COAGULATION

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INR - 1.25 (ref range 0.8 - 1.2)

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LIVER

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ALT - 41 (ref range 4 - 43)

Total Bilirubin - 10 ( ref range 0 - 20)

ALK Phos - 49 (ref range 30 - 110)

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ENDOCRINE

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TSH - 1.6 (ref range 0.30 - 5.60)

Coritsol AM - 354 (ref range 185 - 624)

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GLUCOSE

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Fasting Glucose - 3.2 (ref range 3.5 - 6.1)

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CHOLESTERAL

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HDL (Good) Cholesteral - 1.24 (ref range ABOVE 1.29)

Total Cholesteral - 3.53 (ref range BELOW 4.60)

Triglycerides - 1.06 (ref range BELOW 1.71)

LIPASE - 29 (ref range 13 - 52)

LDL (Bad) Cholesteral - 1.81 (ref range BELOW 2.0)

CHOL HDL Ratio - 2.85 (Normal BELOW 4)

===================

CBC

===================

Hemoglobin - 140 (ref range 135-180)

Hematocrit - 0.412 (ref range 0.37 - 0.54)

WBC - 4.1 (ref range 4.0 - 11.0)

RBC - 4.52 (ref range 4.50 - 6.50)

MCV - 90 (ref range 80-97)

MCH - 30.6 (ref range 27 - 32)

MCHC - 340 (ref range 320 - 360)

RDW - 13 (ref range 11 - 14.5)

Platelet - 190 (ref range 150 - 400)

ABS Neutro - 2.2 (ref range 2.0 - 7.5)

ABS Lymph - 1.2 (ref range 1.1 - 3.3)

ABS Mono - 0.4 (ref range 0.0 - 0.8)

ABS Eos - 0.4 (ref range 0.0 - 0.5)

ABS Baso - 0.0 (ref range 0.0 - 0.2)

I know nothing is drastic anymore, but that is because I have been following a gluten free diet for a year (i know my levels are still high but I am strict, I can`t figure out what is wrong :-() I just think it is annoying that my GI doctor thinks it couldn't be Celiac still bothering me since my Albumin is high and my blood levels are not that bad (showing signs of opposite of malabsorption). In the past my levels had anemia and more deficiencies, but I still have some levels I want better. I want my B12 higher, but he feels 206 is good enough, I disagree especially since my B12 has dropped from 286 in last 2 months. I want my zinc and vitamin d up, he said it should be higher but its not bad at this level. I want my ferritin higher, especially since it has dropped 20 points in 2 months and I am 24 year old male who should have higher iron. I also wonder why my liver enzime ALT is borderline high, good cholesteral is low and why my blood sugar is low a lot (roughly 3-4 of last 10 glucose tests were low). Also my CBC levels have improved over the year, but why is everything borderline low still (he said HB would be lower if it was Celiac...I was at 120 when diagnosed, but it is not exactly high. ) Also all my CBC numbers swing from the levels here to mildly low, never are midline or even close. Anyways, that is my 2 cents. He now wants to test B6 and some other levels to check for neuropathy causes. My neurologist already told me I have autonomic damage and I had a pacemaker put in at 22 (now 24), what other proof does he want? Regardless if my levels are good now, the damage is done. Sorry for the rant, I'm just wondering if anybody has any input on my levels. Thanks a lot!

[ravenwoodglass]

Your B12 is really pretty low. You may want to take some sublingual B12 for a while. Make sure it is gluten free and be sure it is sublingual. You may also want to consider supplementing D3 as you are on the low side for that also.

Your TTG is still pretty high. What are you eating and drinking? Are you being careful to avoid CC? Have you checked all scripts and supplements to make sure they are safe? It is not uncommon for us to have wonky liver panels if we are still getting gluten somewhere and your still having D and the elevated TTG indicate that also. Tell us what you are eating on a regular basis and perhaps we can help you figure out where gluten is sneaking in.

[seashele2]

The fatigue and headaches could easily be caused by the low B12 and low D levels. I supplement both and most celiacs have to. The diarrhea could be a few different things. I would first suspect whatever is causing your elevated celiac panel. After 1 year of being gluten-free, it should be negative for celiac, not elevated. Are you using separate toasters, food prep surfaces, etc in the kitchen? Separate jars of mayo, peanut butter, jelly, margarine, etc for your foods? Are you storing your gluten free foods in separate cabinets from gluten-containing foods? If you don't have space for that, the gluten-free foods have to be above gluten-containing foods to keep gravity from landing gluten on your gluten-free items. Do you wash your hands with soap and warm water every time you touch something with gluten? At the very least every time you eat or touch anything that will transfer the gluten to somewhere that needs to be gluten-free. We use a lot of hand moisturizer in this house. Do you have a separate tube of toothpaste? You are getting quite a bit more than 20 PPM of gluten into your system based on your lab results. After my initial diagnostic labs, I have tested negative for celiac as has my daughter because we are extremely careful.

There are a couple other causes possibly for your diarrhea. I became allergic and intolerant to several foods after my body actually started to absorb what I was eating. I never had food allergies/intolerances before my celiac diagnosis & now I do. They can cause diarrhea. Keeping a food diary and looking for a pattern is about the only way to track that down. Another thing to have checked if you get a colonoscopy is for microscopic colitis. It is common in celiacs from everything I have read and it causes diarrhea. Both my 17 year old daughter and I have it.

Hope you feel better soon. I know I haven't felt well for years, even after diagnosis and being gluten-free with negative labs because so many other things have started since then. I long for the day when I feel "normal" again too.

Michelle

Western Washington State

[alevoy18]

Hi,

Thanks for both the responses.

Yes I agree, the B12 and Vitamin D could be causing the issues, but my GI doctor does not feel this could be the case. He is fortunately sending me for a colonscopy just to be safe. The diarrhea doesn't really bother me too much since it is off and on, but the fatigue and headaches are affecting my life. I have no energy all the time. I am currently on short term disability from work as my other doctor wants me to rest before I go back, which will be soon. I had a pacemaker put in and started medication to raise my BP before Celiac diagnosis. Still have lots of issues with this, which is as I said, due to autonomic issues. I think a lot of my problems has to do with this as well.

As far as eating goes, I usually always eat the same type of foods. Rice, potatoes, veggies, real meats (no processed), fish, gluten-free cereal, gluten-free side dishes (stuffing, risoto), kettle chips, homemade gluten-free cookies and sweets, McCormick spices only and gluten-free ketchup/bbq sauce, drinks only diet pepsi/coke/ or water or 100% Columbian Folgers Coffee. I am a very routine with my food, so I eat almost the same meals everyday. I have called every company or ingredient I buy to ensure their is cleaning done and it is gluten free, so I'm not sure where I have went wrong here.

As far as the kitchen, I have plastic dishes, strainer, cooking utensils, frying pans, toaster. Basically anything that isn't stainless steel, I have a separate item for it and it is all stored in my gluten free cabinets of the kitchen. All the gluten-free food is stored in certain cabinets away from gluten food. I prepare my supper at a different time then my fiance. Basically she will cook, then I clean everything down and then I cook. We share peanut butter and margarine, but my fiance is very cautious to never dip anything but a clean knife into the PB and to never dip the knife twice (although as I type this, this seems like something I need to change as it could of hurt my progress). I try to wash my hands after touching anything with gluten, but no, I am not strict with that. I do have a seperate tub of toothpaste, my fiance and I use seperate bathrooms. Hmm...after reading this, I have a few things to change.

I was just curious, do you agree with my GI doctor that my lab results don't look like somebody with active celiac disease. I feel this is a false statement because he is basing it on not all my vitamin levels being low and my albumin being high. The albumin makes sense, I likely am a bit dehydrated from the diarrhea and that would elevate it. As far as vitamins and other numbers, I think I have enough numbers low and don't need them all there. He doesn't question my diagnosis, but he wants to check if maybe it is a bowel infection instead of Celiac since I am not improving my numbers, yet he feels my blood work is not that bad. Anyways, thanks again.

[cassP]

where do u live? r u in the States? or overseas??? im just confused- by your cholesterol numbers- i dont understand the numbers.. for example ive only seen HDL as aiming for over 50 or 60... ive never seen it as a 1.0 ??? i was confused with all your cholesterol numbers?

BUT- your B 12 numbers and ranges look like what im familiar with... and i do NOT think your number is high enough, my sister in law's levels were down in the 200s (within range)- yet she actually ended up in the ER with SEVERE anxiety & dizzyness and some neuropathy in her hands & feet.. so, no, your number is not high enough- i would think it would be good to get it up over 6 or 700 but keep it within range (as some have said you can have it too high)

[alevoy18]

Hi,

Sorry, I forgot to mention I am from Toronto, Canada. Our lab ranges are always quite different as we use different measurements, that is why I'm always sure to post the range numbers. Sorry to be confusing and thanks for the comments. The only problem is in Canada, our health care system is government funded, so we have to do all tests through our doctors approval and all my specialists feel my levels are high enough. Oh well :-(

Thanks

[cassP]

getting our docs to do the tests we want here in the US can be quite a struggle...

and believe me- there are many on here with B12 levels as low as yours and had american docs tell them they were fine too.

but u could still supplement without them, right?? i think sublinguals are better than pills. i hope u feel better soon

[alevoy18]

Hi,

Yeah I'm sure our health care has some similarities, unfortunately it has to do with doctors disagreeing with our well being. I've learned you have to push and push if you want to get the care you need, as I'm sure we all have learned already. Yeah I can still supplement myself, and I have been using the B12's that go under your tongue, but my B12 has still dropped from 286 down to 206 during these couple months that I've regressed in my health. Unfortunately my GI doctor told me he doesn't feel 286 to 206 is a significant enough drop to worry about, that is almost 30%!! Anyways, thanks for all the tips everyone and if anybody else has any input or similar stories, feel free to post.

[hazelbrown10]

Well, I had a B12 of 270 and I felt horrible! Headaches, tingly hands and feet, fatigue. The sublingual B12 helped tremendously. I don't think I am especially sensitive to cross-contamination (yet) but maybe you are. Would your fiance consider going gluten-free so your house would be totally safe? Then you could cook just one meal

[John C.]

Zinc deficiency or Liver disease causes -> vitamin A deficiency causes -> High Albumin

Zinc is necessary to release Vitamin A stored in the liver. Liver disease could also impair the release.

The same issues would lead to you having high cadmium as well, I think.

Since normal is different for every one, temporarily consider all of your yellows to be reds and all of your reds to be very red and then ask, which "reds" relate most to your symptoms.

My rule is: If a test result is near the edge of normal and you have symptoms which would "make sense" if a result was outside of normal, then your symptoms may very well be treated by taking a drug, vitamin, or mineral that pushes the value toward the center of normal. Most experience doctors will work with you if you have a "hunch" that you are a bit outside of normal. A general guideline is that at least 5% of people who actually need treatment show up just inside the normal range but are outside of "their" normal for a given diagnostic test. Everyone's normal is different so you may have Thyroid symptoms at a TSH of 4.6 & it may take a 7 for me. I use five percent, but in reality, it depends on a tests specificity, sensitivity, the distribution curve of the "normals" and associated metrics, alternate homestatic mechanisms, etc.

My impression is you have both some liver dysfunction and a zinc deficiency. It's not your fault, but the Celiac disease aggravated by the diarrhea. Your magnesium level is very likely low, but it's impossible to tell from the serum Mg test you took (you would need and Mg ion test or an EXA). You seem to be functionally dehydrated from the diarrhea and this is making everything worse.

If I were you, I would:

Ask for a full liver panel to more thoroughly assess your liver issues and a Magnesium EXA or Ion test to determine intra-cellular Mg.

Get a full panel for your kidneys since they will make treatment ineffective and/or dangerous if not fully healthy and could actually be the cause of your issues.

Take supplements to push the Zinc (& Magnesium if low) to the middle of the normal range

After Zinc and Mg are good: If Vitamin A hasn't improved, take beta-carotine. Same with Vitamin D.

Concerning diarrhea if it doesn't go away soon, you need to work hard on stopping it. If it's bacterial, flagyl may be warranted. If not unfortunately, prednisone (and a Calcium Citrate supplement).

Have a clear written proposed plan and have the nurse put it with your records for your doctor to review BEFORE he/she comes into the room to talk with you. He/she will likely want to alter the plan slightly based on an examination or their determination as to what is the most pressing issue. With the seriousness or your situation, do not meeting with a PA in place of the doctor. The good news if that if you were good for a while, you will likely be able to get back to that.

Best of luck and share your results!

John C.

[GFinDC]

Hi,

...

As far as eating goes, I usually always eat the same type of foods. Rice, potatoes, veggies, real meats (no processed), fish, gluten-free cereal, gluten-free side dishes (stuffing, risoto), kettle chips, homemade gluten-free cookies and sweets, McCormick spices only and gluten-free ketchup/bbq sauce, drinks only diet pepsi/coke/ or water or 100% Columbian Folgers Coffee. I am a very routine with my food, so I eat almost the same meals everyday. I have called every company or ingredient I buy to ensure their is cleaning done and it is gluten free, so I'm not sure where I have went wrong here.

...

Hi Alevoy,

Since your antibodies are still somewhat elevated, you might want to look at what you are eating and change some things there. gluten-free cereal may not be entirely 100% gluten-free, chips may not be 100% gluten-free, gluten-free cookies my not be 100% gluten-free, any processed foods can be cross-contaminated with minute amounts of gluten. It would be a good idea to eliminate these things for a month or 2 and see if you notice any positive improvements.

Are all the gluten-free foods you eat tested for gluten? Even if they are, the tests are only accurate to 5 PPM, so if you eat enough gluten-free flours, products etc, you can still get a enough gluten to trigger a reaction. There is no test for zero gluten in a product.

[alevoy18]

Thank you very much for your detailed response!

John: You mentioned low zinc will cause low vitamin A. Fortunately for me only my zinc, vitamin d and B12 are low. You also mentioned that you suspect liver dysfunction, why do you say this, just curious?

Thanks again for the info!

GFinDC: Thanks for letting me know this, I will try to eliminate processed foods for awhile.

Thanks!!!