New diagnosis/test results & questions

[ws19817]

Hello,

I have a new possible Celiac diagnosis and was hoping y'all could help me!

I am 25, and after going to see many different doctors with no real answers as to why I felt generally sick all the time (headaches, GI symptoms including stabbing stomach pains, weight fluctuation with no explanation, fatigue, brain fog, etc.). I went to a more homeopathic doctor a couple of months ago (still an MD) who was more receptive and ran a ton of tests. She diagnosed me with Celiac based on a blood test. I went off gluten (that was about 7 weeks ago) and while I did start to feel better (certainly less stomach pain & brain fog) I have also just felt like my body was completely knocked out of whack since then--weird issues with blood sugar where I've felt like I was going to faint sometimes, my period came two weeks early (rare for me), stomach not hurting but just acting bizarre, etc. 

I went last week to a Celiac specialist. I know going off gluten before doing more testing was going to skew the results, but I couldn't get this appointment for 6 weeks after the initial diagnosis and I didn't want to wait. Plus, my sister has Celiac (diagnosed 6 years ago through blood tests--though we don't think she had the genetic test--& had an "inconclusive" biopsy--she has been generally symptom-free since going off gluten). So I went to talk the specialist and she agreed to do the blood tests again even though I'd been off gluten (personally I wanted to know if they had gone down, plus with 6 weeks of gluten I knew there was a chance they'd still be high). This doctor now says she wants me to try a gluten challenge and agree to do the tests again and the biopsy--but I am not super interested in that. It seems that she would still recommend never eating gluten again if additional tests were inconclusive, so I just don't know what the point would be. Every doctor I've been to said the endoscopy could be negative for damage and they'd still recommend not eating gluten. 

I also have had some nutrient deficiencies in the past year. I became a vegetarian a year ago and three months ago a different doctor realized I had iron & B12 deficiencies (which she attributed to not eating meat though I was watching my diet very closely to make sure I was eating right... so that supported the next doctor's Celiac theory). So my iron & B12 went back up with supplements. I asked the Celiac specialist to do some other nutritional panels just to see, though, and my zinc was low (only one she did where I am not supplementing). I thought that was odd. Also, my CRP has decreased since going gluten-free which I found very encouraging (I have also been supplementing since August with turmeric, however). 

Here are the relevant test results (as they appear on lab reports):

Aug. 19, 2016

TTG igG - 10.2 U/ML (positive >9)

High Sensitivity CRP - 5.0 MG/L (high >3.0)

Oct. 18, 2016 (after about 7 weeks gluten-free)

Deam Gliadin IgA Ab - 7 U (standard <20 U)

Tissue Transglutaminase IgA Ab - 7 U (standard <20 U)

Tissue Transglutaminase IgG Ab - 7 U (standard <20 U)

C-Reactive Protein - 3 mg/L  (standard <5 mg/L)

Zinc - 0.59 ug/mL (standard 0.66 - 1.10 ug/mL)

Though I don't totally understand the new test results (and the doctor isn't going to discuss with me until our next follow up) my interpretation is my antibody levels are now normal, which would be consistent with going off gluten... I guess I am just generally frustrated. I would really like to "buy in" completely to the Celiac diagnosis and not have nagging doubts that there's still something else I need to be doing and I'm never going to feel better. I know going gluten-free can take more than 7 weeks to relieve symptoms, but it's hard when I still don't feel great. Also, for the record, I've had a sister with Celiac for 6 years, so I am very confident that I have actually been gluten-free for the past 7 weeks (it wasn't something totally new to me). The Celiac diagnosis FEELS more right to me than anything doctors have told me in the past, but it still feels like there's some piece missing, I guess. But maybe it just hasn't been long enough. 

The Celiac specialist also started me on Xifaxin (antibiotic) for symptom management whether or not I have Celiac. Only been on it for a couple of days, though. I have also been trying digestive enzymes and have experienced some relief in the past week or so--one question I've been grappling with is whether I should eat meat for awhile--the veggie/bean heavy diet can't be easy while my stomach is supposedly healing--but I of course would rather not. 

Any advice?

[IFit-Celiac]

Hi WS,

So sorry to hear your not feeling quite right just yet. I can relate! I believe in doing whatever is needed for you to be able to come to terms with the diagnosis, which it sounds like was given to you already but if you still need further evidence then do whatever is needed!  In regards to food, I am a pescatarian so I also don't eat meat but I get my protein from some seafood, eggs, beans, natural protein replacements, exct...I was vegetarian and found it extremely difficult on the gluten-free diet for my lifestyle. I found probiotics have really helped me but even now I still feel off days with my digestion and I think that just comes with having a digestive disease. I know what foods trigger it (Yes gluten-free foods!) and try to stay away. I remember the first month or so I was very sick from removing gluten, almost like withdrawal symptoms. Probably because I ate a lot of it prior so it was a shock. 3 1/2 years later, I still feel weak and light headed if I don't eat enough carbs/protein. Celiacs are known to have deficiencies already so your nutrition intake/supplements are super important! I hope your able to find peace with your health and get the answers your looking for! Let us know an update

-Cristina 

[emma6]

i believe TTG igG can be slightly elevated by causes other than celiac so i personally
would peruse a further diagnosis but it did go down from being gluten free

did they ever test total Iga as well? or DGP Igg?

i have issues with low blood sugar as well i have to eat every 3 hours
but have found a slight improvement from eating more low gi foods and less processed gluten-free foods

im also vegetarian, i first got diagnosed with an iron deficiency
which doctors immediately blamed on being vegetarian and like you i knew i was eating alot of iron plant based foods and supplements which had been working fine for seven years.
spent a few months eating meat and taking high dose iron supplements with no improvement
until i finally found a doctor who agreed it could be malabsorbion even though that is "so rare"

only you can decide if eating meat is the right decision it might help you it might
not it made me feel worse as my body was struggling to digest it but everyone is different.just dont let people convince you thats the only solution to getting better.

 

[ws19817]

Thanks for the supportive responses!

Cristina- It's always encouraging to hear of people who didn't miraculously feel better but only after "withdrawal" stopped because I do feel like that might be what's happening to me (though I wish all of us could feel better instantly!. Probiotics seem to be helping me too.

The antibiotic I was prescribed actually made me very sick (throwing up, fever) within the first few days of taking it so that was a bust. Oh well! I didn't think that was really going to be the answer. 

emma6- I was confused about that as well. The second doctor did say she was going to do the total Iga, because the first doctor had not, but then when she sent me those new results I was unsure what was what. And I am not sure what DGP Igg is? The only thing I think I understand is that the TTG IgG went down in between the two tests... I had also tried to research what else causes that level to be elevated, as you mentioned, but it's really hard to figure out. I've looked around the forums and seen other people be confused as well, but if you have any more thoughts about that, please let me know!

Also, thanks for the great thoughts about a vegetarian diet--I would also start with fish if I had to, Cristina, but like emma6 said I also wonder if any meat would just be harder on my digestion. It's not like when I was eating I was feeling that great! I'll keep at it for now. 

Thanks again everyone. 

[IFit-Celiac]

Your welcome! Send an update on how your feeling, hopefully better!  

[GFinDC]

Hi ws19817,

One research study found it can take up to 18 months for some celiacs to heal the gut.  Some people don't  completely heal in that time though.  Antibiotics are something to be avoided IMHO.  Celiacs have a damaged gut at the beginning and the last thing you want to do is kill off all the bacteria that help you digest foods.

On 10/28/2016 at 4:57 PM, ws19817 said:

... I was unsure what was what. And I am not sure what DGP Igg is? ....

DGP IgG is demaidated gliaden protein IgG antibodies.  The DGP test for IgA and IgG type antibodies are very specific tests for celiac disease immune reactions.  They are a more reliable tests than the plain IgA or plain IgG.

Personally I think it is helpful to eat lots of protein when trying to heal the body.  Celiacs are already fighting malabsorption issues whlie  trying to heal their gut/bodies.  Our bodies need adequate nutrition to heal correctly.  If the body can't get the protein, vitamins and minerals it needs from food, there is nowhere for it to turn except inward, scavenging what it needs from body tissues,  Did the doctor test you for vitamin D level?  You can get vitamin D from oily fish like sardines, mackeral, tuna and salmon.  There is some vitamin D available in vegetables, but not much.

I was vegetarian for 5 years myself.  So it's not that I don't understand the desire to be meat free.  I just don't think it's a good choice for someone with a chronic condition that impairs nutrient absorption and who is trying to heal their body.

 

[Beverage]

I also felt like I had been hit by a bus the first 1 1/2 months after going gluten free, like I had a bad flu but without the stuffed up nose and cough.  Various deficiencies are common due to the malabsorbtion from Celiacs.  Also I dropped 30 lbs of water weight inflammation, which probably released a lot of toxins that my body had to eliminate.  I actually had a severe vitamin B1 deficiency, i.e., Beri Beri, isn't that strange.  I had blood sugar ups and downs and blood pressure ups and downs, extreme vertigo. Thyroid and kidneys were totally hosed (kidneys down to 40%, quickly bounced back up to 60%, which the traditional doc said would never ever happen ... HAHA).  I recommend working with a good naturopath doctor that has worked with other celiac patients. The traditional doc I had gone to wanted to prescribe or ignore various things.  I preferred on the slower route of giving my body what it needed to let it right itself as much as possible, rather than "fixing" things by treating the symptoms.  I didn't start feeling a lot better until at least a year, it's now been 15 months.  The things we tried that really helped, that I am sticking with, are Berberine and Cinnamon for blood sugar regulation, Selenium and Zinc for thyroid, Ashwagandha for overall.  The blood pressure is finally now stable under 115 / 75 daily all on its own.  I just turned 60 and feel better than I have in decades!  Be patient and persistant and really listen to your body, but find a good ND.