To Pursue Or Not Pursue? That Is The Question.

[Porcelain-dissonance]

I am new here, and albeit my challenges with gluten began when i was rather young, so i've learned a lot looking around the forums here. I was first tested for celiac disease when i was a mere 16 years old. It's been really nice to have this community, as it's been very validating.

 

At the time, my mother had learned about Celiac's disease, and at the time it wasn't well known. So i went on an elimination diet of sorts, systematically eliminating all other common allergens from my diet (as well as a fodmaps diet) before ultimately trying gluten (since gastrointestinal problems including a few intolerances are not unheard of in my family). When i went on a gluten free diet for about 10 months, the stomach symptoms and neurological symptoms (some of which i didn't realize were hampering my day to day life until i embarked on the diet) went away. I went to the doctor for a blood test - not knowing at the time that you had to be consuming the equivalent of 2+ slices of bread to have adequate gluten in your system - and came up with a negative on my results. I have since tried to obtain my exact levels, but have been unable to. Again at 21 i saw a doctor who tested me, and when i told her i was on a gluten free diet she insisted on doing a blood test. When i brought up the fact that you needed to be consuming gluten she told me it would be fine - then was shocked by my levels.

 

Fast forward about four years, and my symptoms have worsened a bit. Since my high school years (i'm 22 years old at this point in time) i've tried going on/off a diet containing gluten to see if it's made a difference, and it has. My achy joints always get MUCH better, the persistent dandruff (which i'm beginning to think may be more than mere dandruff since i've had it since 1st grade if not younger) i've had always seems to go away when gluten is out of my system for a while, the digestive problems i've been having such being an infant subside quite a bit (which even probiotics don't see to soothe, but only really help a wee bit), the oddly persistent acne on my chest and buttocks (which - again - i'm beginning to think may not be acne since it's never waxed/waned like the acne i have on my face and is shaped quite differently) subsides and becomes much less itchy, my skin overall becomes much less itchy (my itching is often so bad that i'll wake myself up at night, hands bloody or with bruises from itching so bad, and cortisone creams, moisturizers, etc. don't work), my thinking is much much MUCH more clear.....i could go on for ages about how my bowels, skin, and neurological responses all seem so subside when i cut gluten out of my diet.

 

I've also had a few new symptoms appear lately which is why i've made it a point to pursue this further:

Normally i never burp, but i've been having wet burps. I've never had heartburn, yet i've been getting severe heartburn, with pain that radiates to my back and is so bad that i literally don't have the words to describe what i experience. The heartburn coincides with nausea so bad that i'm on a bland diet of cereal, bananas, crackers, and things of that nature. Anything else has me dry heaving next to a toilet, and unable to go to work for weeks a time. My bowel movements are odd, yet it feels as though my intestines are incredibly active. 

 

 

Logically, i know that going for a fun allergen panel would be the most reasonable thing to do (including seeing if i have a plain ol' allergy to wheat), but i've had an insurmountable amount bad experiences with doctors over the past year or so, making me rather hesitant. I know it may sound rudimentary, but with what presents as 'vague' symptoms, i'm really nervous to see a doctor. The last two doctors i saw about this chalked it up to my anxiety and mental health (since i have illnesses, and an eating disorder). I'm not saying that these things CAN'T be caused by anxiety, but i've never in my life had these symptoms due to a psychological state, so i find it hard to believe that literally overnight i've developed this sort of reaction. I've also had doctors claim that i was using a gluten free diet as an excuse to engage in eating disorder habits, which makes absolutely no sense to me because it's not as though gluten-free diet products are low calorie, or low in carbohydrates (i do see how some physicians may see individuals using that as an excuse to not eat when in public situations though). If any doctor were to merely speak with my GP, they would find that i was originally tested for celiac disease back in 2009, and developed my eating disorder in 2011. So, i hope that people here can understand my hesitancy to see yet another doctor with these symptoms, because it's frustrating when i approach a doctor only to be told that 'it's all in my head'. I asked her if it was possible that my struggles with an eating disorder could of been a catalyst for GERD, but she wasn't even open to that possibility. This isn't the first time i've experienced this either, as i struggle with very stigmatized mental illnesses.

 

I came back from yet another doctor today, to be told the same thing. I started seeing a gastroenterologist in 2012, after my eating disorder hit it's worst point. So, this particular physician has always been aware of my eating habits. About 2 months ago my stomach pain/problems got so bad that I went to an ER - which says a lot, because my pain tolerance is incredibly high. I've since had an abdominal ultrasound done which came back normal, which is why they claimed it was merely all a matter of anxiety. It makes absolutely no sense to me, because my symptoms have gotten so much worse recently and nobody bothered to even do a HIDA scan before ruling out gallbladder abnormalities (as if gallbladder stones could be the only possible abnormality). 

 

So many people in my family have struggled with this, many of whom are elderly and struggling with other autoimmune disorders, neurological disorders, etc. I've been keeping an eye on my thalamus as my mother as hypothyroidism (along with a few other members of my family) and i'm overdue to check my TS levels (i'll post the results when i get home and rummage through my belongings, to find the paperwork as i'm currently in school). 

 

Any suggestions would be greatly appreciated. I just feel incredibly awkward as i've had many doctors blame my eating disorder, and i feel awkward asking doctors for specific tests. My GP is willing to do an endoscopy for me to check for any damage - but is there anything else i can do outside of a biopsy or blood test that i'm already doing? I haven't seen anything else mentioned. I suppose i'm just here for validation and advise, as many people in life aren't educated/don't know how to be supportive, and only a handful of doctors seem to be thoroughly educated on the topic (which is such a shame, considering the prevalence of celiac disease/NCGS). 

 

I apologize about the long post, and i thank you in advance to anybody who reads it, and responds! Y'all are a fantastic bunch here.

[nvsmom]

Welcome to the board.  

 

There is no other way to find out if you have celiac disease beyond the blood and endoscopic biopsy besides the skin biopsy for the dermatitis herpetiformis (dh) rash.  You might want to check the dh forum on the board and ask some questions there.  I don't know much about that presentation of the disease beyond that it is a maddeningly itchy rash, and that the biopsy sample must be taken from beside the rash and not on it.

 

As for the blood tests, which I know more about , you should make sure you had many tests run because celiac disease tests can miss up to 1 in 4 celiacs with false negatives.  The more tests done, the more accurate your result.  These are the tests:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG
• EMA IgA 
• total serum IgA (control test)
• AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

Some are positive just in the tTG tests, others just in the DGP tests, and yet other are only positive in the IgA or IgG based tests only... then there are the few who only test positive in the biopsy. Getting a bunch of tests done can help with the diagnosis.  Do make sure you are eating gluten in the 8-12 weeks prior to testing or you'll get more negatives... That is if you decide to try blood tests.

 

The endoscopic biopsy only needs 2-4 weeks of gluten before the procedure so it may be the less difficult route to go.

 

When you get your thyroid checked, if possible get more than the TSH done. The TSH can be normal in some with Hashimoto's hypothyroidism so you need to check the actual hormone levels.  These tests are what I would request:

• TSH - should be close to a 1 regardless of the lab's normal range
• free T4 and free T3 - should be in the 50-75% range of the lab's normal reference range
• TPO Ab - should be pretty low

My cousin who has celiac disease also suffered from an eating disorder when she was a young adult.  It's actually found with a higher frequency among celiacs than in the regular population... I'm afraid I can't remember where I read that though.  Celac could be linked to your eating disorder - it could be something to check into a bit.

 

Anyways, welcome to the board again.  You sound pretty well educated in the topic so I am sure you will get you answer, whether it is celiac disease or NCGS, eventually.  Best wishes in whatever you decide to do.  

[Porcelain-dissonance]

Welcome to the board.  

 

There is no other way to find out if you have celiac disease beyond the blood and endoscopic biopsy besides the skin biopsy for the dermatitis herpetiformis (dh) rash.  You might want to check the dh forum on the board and ask some questions there.  I don't know much about that presentation of the disease beyond that it is a maddeningly itchy rash, and that the biopsy sample must be taken from beside the rash and not on it.

 

As for the blood tests, which I know more about , you should make sure you had many tests run because celiac disease tests can miss up to 1 in 4 celiacs with false negatives.  The more tests done, the more accurate your result.  These are the tests:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG
• EMA IgA 
• total serum IgA (control test)
• AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

Some are positive just in the tTG tests, others just in the DGP tests, and yet other are only positive in the IgA or IgG based tests only... then there are the few who only test positive in the biopsy. Getting a bunch of tests done can help with the diagnosis.  Do make sure you are eating gluten in the 8-12 weeks prior to testing or you'll get more negatives... That is if you decide to try blood tests.

 

The endoscopic biopsy only needs 2-4 weeks of gluten before the procedure so it may be the less difficult route to go.

 

When you get your thyroid checked, if possible get more than the TSH done. The TSH can be normal in some with Hashimoto's hypothyroidism so you need to check the actual hormone levels.  These tests are what I would request:

• TSH - should be close to a 1 regardless of the lab's normal range
• free T4 and free T3 - should be in the 50-75% range of the lab's normal reference range
• TPO Ab - should be pretty low

My cousin who has celiac disease also suffered from an eating disorder when she was a young adult.  It's actually found with a higher frequency among celiacs than in the regular population... I'm afraid I can't remember where I read that though.  Celac could be linked to your eating disorder - it could be something to check into a bit.

 

Anyways, welcome to the board again.  You sound pretty well educated in the topic so I am sure you will get you answer, whether it is celiac disease or NCGS, eventually.  Best wishes in whatever you decide to do.  

 

I've had a lot of bad experiences in the healthcare system with my mental health. It's sad, but having a highly stigmatized disorder, if you don't do your own research and aggressively pursue the treatment you need....you get screwed. The problem is, i've started applying that to all the physicians i see, which may or may not be a good thing, because i've seemingly hurt a doctor's ego more than once, which didn't work out well for me in the end. I'll never diagnose myself with something as i have adequate access to healthcare, but i always try to stay as informed as i possibly can. So thank you  

 

Yeah! There are theories that the Celiac's may actually trigger the eating disorder (which actually isn't uncommon among autoimmune d/o's as a whole), which i've noticed speaking to other eating disordered individuals and going to support groups. Seeing how celiac disease has both gastro. and neurological effects, i wouldn't at all be shocked if they're ultimately related. The information isn't really that conclusive as of right now though, since not much research is really going into eating disorders in the first place, let alone the comorbidity of eating disorders with other disorders. :/

 

Thank you for the information about the hormonal levels! I knew about the TS and T3/4, but not about the TPo ab, so i'm going to go do some reading. I've spent a good deal of time already in the DH forum trying to figure out whether or not my skin is experiencing the dermatitis, but to be quite frank i struggle a lot with self validation ('tis something i'm working on). So i go back and forth a lot about how much of this is 'in my head' and how much of this is truly a medical condition i may be experiencing - which is utter nonsense, since my fiance who's been living with me for years has time and time again told me that there's very obviously something up with both my skin, and my digestive system.

 

Sorry for the ramble and thank you for your response! 

[StephanieL]

 

The endoscopic biopsy only needs 2-4 weeks of gluten before the procedure so it may be the less difficult route to go.

 

 

Where have you seen this information?  Is there a suggested amount too that has been Dr. approved/suggested?

[cyclinglady]

Where have you seen this information?  Is there a suggested amount too that has been Dr. approved/suggested?

Stephanie,

Here is a link from the University of Chicago regarding a gluten challenge. Yes, it states just two weeks of eating 1/2 slice of bread daily for two weeks prior to an endoscopy and 12 weeks for the blood test:

Open Original Shared Link

After my "barely positive" blood test, I consumed gluten like crazy prior to my endoscopy. Literally, I ate a loaf of buttered sourdough a day and purchased every favorite baked good I could get. It was a fond farewell -- I knew, in my heart, that I had celiac disease. I had no intestinal symptoms prior to my blood test -- just anemia. After my gluten binge (seven weeks before I scheduled my endo due to work-related constraints), I developed actual stomach pain. My stomach (the actual organ) pinched with pain when I bent over. Swelling was visible over my stomach. And transit time slowed down. Found that out during my prep for both the endo and colonoscopy (which was originally going to be my procedure based on joining the "over 50" club).

In retrospect, I should not have gone overboard and I would have prevented more damage (biopsy showed Stage IIIB) and maybe I would have recovered faster on my gluten-free diet. But mentally, I think I did the right thing. It made it easier to give up gluten for life.

Unlike many others, I knew what going gluten free meant since my husband had been gluten free for 13 years. On top of my allergies, it was a hard blow.

I think a 1/2 slice of bread may be too little, but I will go with the experts.

[nvsmom]

 

Thank you for the information about the hormonal levels! I knew about the TS and T3/4, but not about the TPo ab, so i'm going to go do some reading. 

 

Make sure you get the free T3 and free T4 and not T3, T4, or total T3 or total T4.  The frees will tell you much better what is going on in your body. They should be the primary diagnostic test: what hormones are actually available for use in your body, and not a thyroid stimulating hormone (TSH) made by another gland (which may not be interpretting hormone levels well).

 

The 2-4 weeks of gluten prior to the biopsy was information taken from a few sources, such as books, web sites, doctor advice, and the U of C website that Cyclinglady posted. There is a lot of varying info but most seem to say the biopsy needs 2-4 weeks of gluten.  U of C has the lowest level of gluten consumption suggested (1/2 slice), most others suggest 1-4 slices of bread with 1-2 being the mid-line.

 

I can't remember reading Fasano's recommended time frame for an endoscopy gluten challenge.  I don't think I've ever seen that. Huh.

 

I would imagine that longer and greater exposure to gluten (meaning: making yourself quite sick) would give the clearest diagnosis, but I don't think it is a good idea to make yourself too ill - we can't always bounce back.

 

As pertaining to the eating disorders, I have also heard that celiac disease can make an eating disorder more likely. It makes sense to me.  When food makes you ill for an unrecognized reason over a long period of time, that can alter a person's relationship with food.

 

Best wishes to you.  

[StephanieL]

It just seems so crazy to me that two of the top Celiac centers can have such differing opinions on things.  Very interesting.  Thanks!

[Porcelain-dissonance]

Thank you for the information everybody!

 

I went to my GI doctor and got the test done. Since i've been showing signs of bad GERD - to a point where i haven't been to work in 2 weeks - they immediately did an abdominal ultrasound, which came back negative for any stones. So they did a full allergen panel. It's infuriating, because i explained to them that i'd grown up with a lot of symptoms of what may be Celiac's/NCGS, but that my past testing had been done while i was eating gluten free and therefore it wasn't really possible to draw an accurate conclusion from it.

 

So what do they do? Even though i told them that I've been eating a gluten free diet for the past month, they did a blood test on me for such, and they call me to tell me that my suspicions were wrong, due to my levels being negative, and 'very much so' for lack of a better phrase. I told them before the test that my levels would likely come back as such since there would be no gluten really in my system due to the fact that i hadn't been consuming any (and any in my system would be due to accidental cross contamination).

 

I'm infuriated and i clearly need a new GI doctor, since i don't currently have a GP. -.-

[squirmingitch]

I would suggest that you print out these & snail mail them to the GI doc along with a letter repeating that you had TOLD them a celiac blood panel would come up negative b/c you had been gluten free. At the very least perhaps it will EDUCATE the GI for the next poor soul who comes in getting the blood panel.

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[MycasMommy]

and all of this is why I am sure I am skipping my daughters GP completely and paying out of pocket to see a "fancy" specialist doctor that deals with Celiac. I may not be of any help here, but you have helped me. I am crushed over the amount of money I am about to spend. I keep telling myself it is worth it. Thanks for the reminder. <3

[notme]

they told me i had an eating disorder because i never had an appetite.  i never made myself vomit or anything, but i guess not wanting to eat because it hurt (or makes you run for the bathroom, so who has time for that ....) is an eating disorder...  ?  what?     and, you can't fake a rash, lolz, silly doctors     keep diggin' kiddo and welcome to the forum