Was not expecting so many tests....

[Short Longhorn]

Howdy, y'all. Greetings from hot as hades Texas. I want to start by saying thank you to everyone who has posted on here. I'm glad I found this site because I'm feeling very confused, a little bit scared, and I see many of you started your journeys with celiac disease in much the same way. Anyway, long story long...

I'm a 45-year-old female who has been seeing a slew of specialists my whole life and have been seeing the same PCP for over 20 years. I always felt like I was getting good care. However, there have been a few instances where I felt that the communication between them was lacking, and many of them seemed to pooh-pooh anything that wasn't traditional (i.e., Western). So a few weeks ago I went to an integrative medicine MD with chief complaints being hot flashes and what I figured (and had previously been told) was IBS.

As I was going through my history with the NP at the new practice, she noted all my "itis"es and said I might have an issue with gluten. She recommended a gluten-free diet and to get rid of added sugar. Fair enough. She sent me for basic blood work at the lab covered by insurance, and a food sensitivity test with an independent lab. She scheduled me for a follow up in two weeks. I went and had the lab work that same day.

A week later, a nurse called and said that the NP wanted me to get additional blood work done. She mentioned a celiac panel. I asked what prompted that request and she said the results hadn't been finalized by the NP so she couldn't be sure. So naturally, I started Googling "celiac" and as I read about it, it seemed like maybe I was finally getting to the bottom of a host of ailments that have plagued me my entire life. My history follows:

HISTORY:

-Dx at infancy with "milk allergy" to formula and had to have soy-based formula.

-Dx at 18-months-old with Systemic JRA and a bit later, Iritis. Mom noticed symptoms at 9 months (right about when I started eating more than formula) but symptoms were only a slight limp that she attributed to me being a toddler figuring out how to walk. After another 9 months of the run-around from the pediatrician, then an orthopedist, we finally ended up at a rheumatologist. Apparently my rheumatoid factor was always negative but the rheumatologist said that didn't preclude the JRA diagnosis. Rash, fever, stiffness, joint inflammation...all were present and indicative of systemic JRA. Went through flare-ups and remissions throughout my childhood until about my early 20s. I learned how to get around it by not doing any sort of high-impact exercise. It's been pretty calm since then with persistent stiffness in a few joints and very rarely, swelling. No more rash or fever.

- Dx at 22 y.o. with IBS. Blood in my stool and severe stomach cramping that my PCP at the time attributed to being over-prescribed antibiotics (that he'd prescribed). Symptoms improved somewhat (no more blood) but occasional diarrhea remained. Had a sigmoidoscopy, which was normal. Being 22 and in college  , I began to make a connection between beer and my occasional D.

- Dx at 25 by PCP with Graves' Disease. My eyes were bugging out of my head. (Had to have a crazy surgery to fix that.) He prescribed antithyroid meds which normalized my levels. Began seeing an endocrinologist to manage the Graves. 

- Had my sweet baby boy via C-section at 30, unable to breastfeed, found out then that I had become hypothyroid out of nowhere, after years of being normal. Went back to the endocrinologist and was prescribed Synthroid and, voila! I had milk!

- Endometriosis with laparoscopic removal over and over from 31-42ish. Tried to conceive again but fertility meds made the Endo worse, then had a total hysterectomy at 42. Was prescribed estrogen, progesterone and testosterone.

- Around 40, had a wicked thrombosed hemorrhoid. Went to a GI who did a colonoscopy, referred me to a colorectal surgeon who removed a bunch of internal and the one external hemorrhoid.

- Pulmonary Embolism at 43, Dr in hospital took me off estrogen. Hot flashes ensued. Went to a menopause specialist to see if there was anything that could be done about that (because let me tell you, hot flashes are So Not Fun in hot-as-hell Texas). She prescribed Gabapentin, an anti-convulsant that is prescribed off-label for hot flashes, and it's helped. 

- For the last 2-3 years or so, I've had chronic diarrhea. I can't remember the last time I had a normal movement. On a good day I go 2-3 times. Bad days 4-6 times. I work from home so I've been able to manage it without too much fuss. But I recently went on vacation with friends and noticed myself saying "I can't eat that, it'll jack up my stomach;" "I can't drink that, it messes up my stomach;" etc., etc. Always having to know where the bathrooms were, and if I knew bathroom access was limited, I had to take an Imodium beforehand. After that experience, I was just sick of it...literally. So as soon as I got back I scheduled with the integrative medicine doc to see if there was anything non-pharmaceutical that I could do about what I thought was IBS and the hot flashes.

So a few days ago, I got my lab results back and there were a number of out-of-range results.

LAB TESTS [out-of-range results (according to the lab) highlighted in red]:

1. ANA TITER AND PATTERN:

• Centromere, 1:80 (Expected range <1:40)
• Speckled, 1:40 (Expected range <1:40)
• Homogenous, 1:40 (Expected range <1:40)

 

2. CANDIDA ALBICANS IgA, IgG, IgM

 

• IgA, 1.40 (Expected range <=0.89 (EV)
• IgG, 1.31 (Expected range <=0.89 (EV)
• IgM, 1.87  (Expected range <=0.89 (EV)

3. HEMOGLOBIN A1c

• 5.3 (Expected range 4.0-5.6)

4. FEMALE WELLNESS PANEL

	NAME	VALUE	REFERENCE RANGE
	PROTEIN, TOTAL	7.2	6.1-8.3 (G/DL)
	ALBUMIN	4.6	3.5-5.2 (G/DL)
	BILIRUBIN, TOTAL	0.5	<=1.2 (MG/DL)
	BILIRUBIN, DIRECT	0.2	0.0-0.3 (MG/DL)
	ALKALINE PHOSPHATASE	113  H	30-101 (U/L)
	AST	213  H	9-40 (U/L)
	ALT	413  H	5-40 (U/L)
	WBC	6.5	4.0-11.0 (K/UL)
	RBC	4.76	3.80-5.10 (M/UL)
	HEMOGLOBIN	15.6  H	11.5-15.5 (G/DL)
	HEMATOCRIT	44.5	34.0-45.0 (%)
	MCV	93.5	80.0-100.0 (fL)
	MCH	32.8	27.0-34.0 (PG)
	MCHC	35.1	32.0-35.5 (G/DL)
	RDW	12.5	11.0-15.0 (%)
	NEUTROPHILS	57.9	40.0-74.0 (%)
	LYMPHOCYTES	29.7	19.0-48.0 (%)
	MONOCYTES	9.8	4.0-13.0 (%)
	EOSINOPHILS	2.1	0.0-7.0 (%)
	BASOPHILS	0.5	0.0-2.0 (%)
	PLATELET COUNT	233	130-400 (K/UL)
	ESTRADIOL	<17.0	Note: Estradiol sensitivity is 17 PG/ML.
	DHEA SULFATE	92	27-206 (UG/DL)
	INSULIN	14  H	4-13 (UIU/ML)
	FREE T3	7.6  H	2.2-4.2 (PG/ML)
	FREE T4 (THYROXINE)	1.16	0.80-1.90 (NG/DL)
	TSH	0.011  L	0.400-4.100 (UIU/ML)
	THYROID PEROXIDASE AB	357  H	<9 (IU/ML)
	THYROGLOBULIN AB	1	<4 (IU/ML)
	VITAMIN D, 25 OH	23  L	Suboptimal NG/ML 20-29)
	VITAMIN B-12	570	200-950 (PG/ML)
	TESTOSTERONE	12	<=50 (NG/DL) Note sensitivity is 12 ng/dL
	SEX HORM BIND GLOBULIN	64.7	24.6-122.0 (NMOL/L)
	CALC FREE TESTOSTERONE	0.1	<=0.5 (NG/DL)

PROGESTERONE

0.26

5. HIGH-SENSITIVITY CRP

• High-sensitivity CRP, 4.9  (High if >3.0) 

6. ANA (ANTI-NUCLEAR AB WITH REFLEX TITER)

• Anti-Nuclear Antibiodies, Positive (Expected range = Negative)

 

So, since the initial labs, the NP ordered the Celiac Panel, Celiac Genotype, CMP, and a Thyroid Panel. Due to a mix-up between the lab and the doctor's office, only the first two (Celiac Panel and Genotype) are done and I don't have those results yet. I have my follow up in three days when I'm sure all labs will be in and discussed. Based on my research, my autoimmune issues (especially JRA and Graves) make me more susceptible to celiac disease, and a lot of what I see in these labs seem to line up with a celiac disease Dx [elevated AST & ALT, Low Vit-D Low B-12 (before supplementation), Positive ANA, Elevated Alkaline Phosphatase, and Candida]. However, my AST & ALT seem WAY high, higher than what I've seen most people on here post as their elevated levels. Looking into it further it looks like SLE (Lupus) could also be causing some of these results, which is frightening as well.

As for family history, no one in my family has been diagnosed with celiac disease or Lupus, but nobody has been tested, either. My grandmother had celiac disease symptoms her whole life, as do both of her children (my mom and aunt) and both of their children (me, my brother, and my two cousins). My mom and son have constipation instead of D. I'm hoping the Celiac Genotype can help rule out celiac disease at least for me, my mom and son, but if it turns out I've got the genes then I'm going to insist all of them get tested as well. 

Anyway, that was a lot to type. I hope some of the celi-experts on here can help me make sense of these labs in the context of my history and my family's GI issues. The information I've found here has been sooooo helpful, so if anyone has any insight to share, I'd sure appreciate it.

 

[TexasJen]

Hi!  As it turns out, I"m from that same part of Texas too!

It looks like there are lots of things going on in your lab work but nothing that specifically points to celiac.  Your ANA and ANA panel, hsCRP, insulin, AST, ALT, Alk Phos, vitamin D level, TSH and anti TPO antibodies.

You said you are taking levothyroxine now?  It looks like you are taking too much.  Your insulin level is high. That could be related to pre-diabetes (aka IGT - glucose intolerance). 

Your LFTs could be related to celiac or SLE or something like hepatitis, gallstones, fatty liver (which would go along with the prediabetes). It sounds like pursuing the celiac diagnosis is a good start but even if you have celiac, I'm worried you can't explain all of the lab abnormalities with that diagnosis alone. 

I think after you see the integrative med doc, you should consider seeing a PCP (new?) and reviewing all these tests with them as well. Unless you will see the integrative MD as a PCP - I'm sure that is doctor dependent - does your insurance even cover  that? I bet it would be expensive.

ANAs can be positive for a lot of reasons and not all are lupus. And the hsCRP test is puzzling. Usually that relates to your risk of having a vascular event (like a heart attack) in the future. It means you're at higher risk than average. Maybe your doc meant to order a regular CRP and got it confused (the regular one is the one that goes up with lupus)?

Good luck. It sounds like you have a lot going on.....

[Short Longhorn]

TexasJen, thanks so much for your thoughtful response! I really appreciate it. I guess all parts of Texas are pretty dang hot this time of year. Even worse when your internal menopausal furnace randomly decides to turn on as well. 

I'm actually taking Armour Thyroid, which contains both T3 and T4, whereas Levothyroxine is only T4. Endocrinologist switched me after years of levothyroxine, and then levothyroxine and Cytomel (T3), because I kept complaining of fatigue. I requested the Armour instead of the levothyroxine and Cytomel because some people respond better to that, but I have to say the lethargy has remained the same.  I've tested high on the thyroid tests for a few years, and the Endo said as long as I didn't have the symptoms of over-medication he was fine with TSH being low and thyroid hormones measuring high. I know what I felt like when I was hyperthyroid, and I don't feel that now. I've been reluctant to have the dose reduced because I already experience so much fatigue, and didn't want that to get worse. I remember when I was about 7 my pediatric rheumatologist said I had "thyroiditis" but I was a little kid and understood it to mean I had a swollen thyroid, not any sort of disease. Dr. Google says Graves can become Hashimoto's, but I wonder can it go from H to G to H again?

The insulin is just 1 above normal, but anything above normal when it comes to insulin is no good. My dad is a Type 2 diabetic and I want no part of any of the 'betes. I am overweight -- you wouldn't know it by looking at me though. I don't carry weight in my abdomen, mostly in my...um...posterior. My LFT results seem higher than what I've found for fatty liver. However, this will be the third time I've had elevated levels on LFTs. First one about 5-6 years ago. I looked at my results from when I was in the hospital for the PE and they've increased a LOT -- in February of 2016 AST was 76 and ALT was 118. Now they're 213 and 413???

As for the hsCRP, I believe that test was ordered because I have a history of heart disease on my dad's side of the family. So I'm not thrilled to see I'm now considered "high risk."  

ANA could be positive due to any of the autoimmune issues I've already been diagnosed with, correct?

I do plan on seeing the integrative doc as my PCP going forward. Their practice is the only one I've found in Austin that accepts insurance. I'm glad they seem to be digging further to see what's up.

Thanks again for your response!

 

 

 

 

[Gemini]

Wow...so much going on here and they are all intertwined!    Welcome and howdy back....I love the Texas greeting! 

I'll address the testing results because I have comments.......you seem very intelligent because you have already figured some things out that many do not notice. You will need that intelligence as many doctors still run on the notion that nothing is connected in the body and all systems work independently of each other. 

The ANA testing is not specific to any one disease, it just tells you that there is inflammation in your body. It can be elevated from any AI disease and Celiac is one of them. Yours is not bad though, so don't get too worried about it. It could be a lot worse.

A positive on candida testing is not surprising if you do have Celiac Disease because Celiac disrupts the normal bacteria colonies in your gut and that is how candida runs out of control.  Too many bad and not enough good bacteria.  It thrives on sugar so cutting way back on that for now is a very good idea.  It is hard, I have done it but the results were great.  I had constant thrush and I made it go away. Being diagnosed with Celiac improved it to an even greater degree and I never have a problem with it anymore.

The AST, ALT and Alkaline Phosphatase testing are liver tests and these can all be elevated from undiagnosed Celiac Disease.  Mine were, and went to normal after being on the gluten-free diet for awhile.  Having undiagnosed Celiac puts a strain on the liver so it becomes stressed.....the easiest way to describe it.

You were diagnosed with thyroid disease?  Your TPO or thyroid antibodies are elevated but they will be with thyroid disease.  They do not have your thyroid well balanced though and your T3 is way too high...which I am sure you already can feel.  That can contribute to the diarrhea but so can Celiac.

The CRP is another test for inflammation so the key is to find out the root cause of it and do something about it. Having a high CRP does not automatically mean your will get heart disease but it is telling you that you need to find out what is causing all the inflammation.  You also have RA and that is another friend of Celiac disease. Personally, for me, any inflammatory marker test I ever had done while undiagnosed as a Celiac, came back high.  They all went down after the gluten-free diet was started....some by large amounts. I will always have some level of inflammation, due to having 4 AI diseases but it isn't anywhere near as bad as it was.

The key thing here is that you have thyroid disease and RA, plus elevated testing that can occur from Celiac AND you figured that connection out on your own. So, I think with what you already have and the inflammation markers that are coming back high, there is a very good chance you do have Celiac and should be aggressively screened for it. These are all clues your body is throwing out at you and you just need the right doctor to figure it all out.

I also had flashes from hell for 20 years and having really bad menopausal symptoms are a result of your hormone levels being all f**ked up!  I live in Massachusetts ( sometimes I hate admitting that to people)  so I cannot imagine how bad it must have been in Texas!    You actually sound a lot like I was years ago.....always hot and flashing, with 3 AI diseases cropping up over time and then I finally figured it out and went and got tested. The good news is that I had Celiac Disease and when I went strictly gluten-free, things got so much better, over time.  Rewards do not come overnight with this but after the first 3 years, I felt like a new person.

Find a good PCP or functional medicine MD who can help but make sure you get tested for Celiac.  If testing comes back negative or even ambiguous , then do a dietary trial for 6 months and see what happens to your symptoms.  I hope you get to the root cause of this but it does sound like you could have it.  Good luck!

[knitty kitty]

Hi.  Short, your medical history has similarities to mine.  I was severely deficient in Vitamin D and had diarrhea for a long time.  When there is prolonged diarrhea, there is malnutrition.  

Once I started on Vitamin D supplements, I started to feel so much better.  Actually, for a while, I ate them like candy, I craved them. It was very strange, but my body needed the Vitamin D badly.  

Vitamin D is so important to the immune system, in fighting inflammation, and in relation to autoimmune diseases like the ones you mentioned.  Here's some articles.

Graves disease:

Open Original Shared Link

Other Autoimmune diseases:

Open Original Shared Link

Inflammation markers:

Open Original Shared Link

And one more:

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

One of the symptoms of Vitamin B 3 (niacin) deficiency is diarrhea, like what you've described.  I had three of the four stages of pellagra.  My doctors didn't recognize the symptoms because most haven't seen vitamin deficiency diseases and under-value the importance of vitamins. My symptoms improved dramatically once I addressed my nutritional deficiencies (and found new doctors).

Please get checked for other vitamin and mineral deficiencies.  Take steps to correct any deficiencies.  Supplementation is necessary where there is malabsorption.  Please, please, don't underestimate how correcting nutritional deficiencies can improve your health.  

Kitty

 

[plumbago]

Perhaps you can get a celiac panel done? While there is an association between elevated liver enzymes and celiac disease (see below), it would be good to get the celiac blood tests done for a little more certainty.

The only other thing I might suggest is to do some intensive reading on autoimmunity in general. I am constantly researching this in one way or another and recently learned about Dr Terry Wahls who radically changed her diet and is now walking without a cane, hiking, and biking after being bound to a wheelchair for years and years with MS. And that would be just a start. (Diet of course is foundational.)

What I'm reading so far in response to your very thorough post is very good. Below is something from Medscape:

Liver abnormalities are a common extraintestinal manifestation in patients with classical celiac disease and hypertransaminaseaemia could be the only sign of celiac disease, in absence of gastrointestinal symptoms.

The hepatic involvement in our celiac disease patients was asymptomatic, as frequently described in these subjects [15], with the increase in liver enzymes being generally mild or moderate, even though in some patients it may be ten times higher than the upper normal limit.[4] The pathogenetic mechanisms underlying liver injury in celiac disease patients are poorly understood; a widely accepted hypothesis is based on the increased intestinal permeability, which favours the absorption of toxins, antigens and inflammatory substances via the portal vein circulation

Source: Medscape

Open Original Shared Link

Plumbago

[TexasJen]

On 7/10/2017 at 0:54 PM, Short Longhorn said:

TexasJen, thanks so much for your thoughtful response! I really appreciate it. I guess all parts of Texas are pretty dang hot this time of year. Even worse when your internal menopausal furnace randomly decides to turn on as well. 

I'm actually taking Armour Thyroid, which contains both T3 and T4, whereas Levothyroxine is only T4. Endocrinologist switched me after years of levothyroxine, and then levothyroxine and Cytomel (T3), because I kept complaining of fatigue. I requested the Armour instead of the levothyroxine and Cytomel because some people respond better to that, but I have to say the lethargy has remained the same.  I've tested high on the thyroid tests for a few years, and the Endo said as long as I didn't have the symptoms of over-medication he was fine with TSH being low and thyroid hormones measuring high. I know what I felt like when I was hyperthyroid, and I don't feel that now. I've been reluctant to have the dose reduced because I already experience so much fatigue, and didn't want that to get worse. I remember when I was about 7 my pediatric rheumatologist said I had "thyroiditis" but I was a little kid and understood it to mean I had a swollen thyroid, not any sort of disease. Dr. Google says Graves can become Hashimoto's, but I wonder can it go from H to G to H again?

The insulin is just 1 above normal, but anything above normal when it comes to insulin is no good. My dad is a Type 2 diabetic and I want no part of any of the 'betes. I am overweight -- you wouldn't know it by looking at me though. I don't carry weight in my abdomen, mostly in my...um...posterior. My LFT results seem higher than what I've found for fatty liver. However, this will be the third time I've had elevated levels on LFTs. First one about 5-6 years ago. I looked at my results from when I was in the hospital for the PE and they've increased a LOT -- in February of 2016 AST was 76 and ALT was 118. Now they're 213 and 413???

As for the hsCRP, I believe that test was ordered because I have a history of heart disease on my dad's side of the family. So I'm not thrilled to see I'm now considered "high risk."  

ANA could be positive due to any of the autoimmune issues I've already been diagnosed with, correct?

I do plan on seeing the integrative doc as my PCP going forward. Their practice is the only one I've found in Austin that accepts insurance. I'm glad they seem to be digging further to see what's up.

Thanks again for your response!

 

 

 

 

What practice are you seeing in Austin that accepts insurance? That is very interesting!

[Short Longhorn]

1 hour ago, TexasJen said:

What practice are you seeing in Austin that accepts insurance? That is very interesting!

It's Wiseman Family Practice. They've got offices in Westlake, Central Austin and Cedar Park and they accept a lot of different insurance. It's the only Integrative, Functional or Holistic practice I've found that accepts any sort of insurance. So far I've been pretty impressed with the way they've handled things, for example considering Celiac and Candida. I can't tell you how many times (>10) that my PCP and Gyno prescribed diflucan for the dreaded YI and then antibiotics for the BV that always followed.