Follow Up

[Maddi]

I went to a new doctor who ordered blood work for Celiac panel, wheat allergy, h.pylori, and hormone levels on Aug 13th. I called last Monday and was told I had to wait 10 business days, so I did... still no call. Today, I call again and she tells me that my results are not in my chart and that he might be waiting for me to go back for a followup visit to reveal my test results. Yet he didn't tell me to follow up. Argggg! So now I'm waiting for the secretary to give me a call back to let me know if he wants to see me to give me my results over the phone or not. I'm beyond EAGER to get answers! ! I just want to know if I have Celiac or not.

Since before my blood tests, I went gluten free (only for 2 weeks and I made a lottttt of mistakes so I don't even count that as my start date). Now I've been gluten-free for 2weeks (for real this time) butttt I did make a mistake and had a Starbucks frappuccino bc I was craving one soooo badly. Well now I'm only sticking to whole foods with the exception of peanut butter and my amazing bf buying me a certified gluten free dark chocolate bar. Welllll, although I definitely have seen improvement (no more anxiety, yayyy. No more insomnia. No more hot flashes!!! No more extreme anger... I can actually control my anger! AND NO MORE FATIGUE!!!!) I still have issues with pain in my body (from head to toes... and my stools aren't normal yet) I know I have an intolerance to nightshades bc I had some eggplant and tomatoes last week and boy oh boy did I have extreme tummy aches and loose stools. So I'm now avoiding those for a while. And I'm still tired and I'm suffering from that horrible depersonalization that started about 2 months before going gluten-free. I think it's probably bc of malabsorption since my anxiety is gone and it came along with that. Yet it's still very much present. And my acid reflux has also gone crazy since last week bc of the nightshades. And I feel tired mostly in the mornings.

So from what I can tell, I've felt sick for 2years... I didn't think my symptoms could get worse boy was I wrong. For the past 5 months I've had weightloss, bulky stools with undigested food, stomach aches, body aches that I never had before, insomnia (never ever had this before), hot flashes (I'm 26?!!!), severe anxiety and panic attacks... for the first time in my life, depression (still present ugh), and dizziness which I've never had aND extremely dry hair and skin (my hair has always been on the oily side... so much that I used to never use conditioner!!! ): now I use conditioner and oil afterwards and it's still horrible looking!!!) I'm also extremely hungry an hour after eating!!!! All my symptoms point to Celiac yet I'm terrified that it'll come back negative. Before 5 months ago, my only symptoms were hunger and fatigue but not as badly as it got a few months ago a weird pinching pain in my tummy that I regret calling pain bc now i know the realast meaning of a stomachache. In Feb my doctor ran a Celiac panel and my tests were negative. Then come April my symptoms got 100 times worse. I hope I get an answer.... bc I've been extremely sick. I'm slowly getting better and I know it's too soon to tell but I can see some of my symptoms going away and I pray to God that eventually all of them will disappear. Sorry I'm just venting bc I'm so eager to get answers.

[Maddi]

So the doctor wants me to come in to give me my results in person. I'm having mixed feelings about this. Could this mean that he's found something? I'm overwhelmed with excitement and fear. I have my appointment at 2:45. 2hours and 43 minutes from now. Yes, I'm counting. Months of suffering and I might just get my answer today. (: I'll update as soon as I get my results. I'm trying to not get my hopes up but it's really hard. So many symptoms. And no one has been able to give me an explanation other than the oh so ever dismissive, "it's all in your head" response.

[bartfull]

It sounds like you might have a good doctor. I'm guessing if the blood tests are positive he wants you in there so he can schedule an endoscopy with biopsy. If that is the case you really need to still be eating gluten. Let him know you stopped and he'll probably have you eat gluten for a few more weeks before the test.

 

Let us know how it goes.

[nvsmom]

Hope it went well.  

[Maddi]

I'm back you guys. If someone could help me. My dr ran the Celiac panel from LabCorp. I know the immunoglobulin A was like 200 something. The rest I can't remember. Well he told me he ran the IGM antibodies and that they're a bit high. Can this be at all related to Celiac? Or not at all? Sigh I'm lost. 

[cyclinglady]

Call and ask if you can pick up a photocopy of the lab results. It is your right to have them (you and your insurance paid for them). Next time, take notes or bring someone with you who can take notes. Did you ask him if you have or he suspects celiac disease? Try calling back and ask the nurse to read the chart.

[Maddi]

He told me that I don't have Celiac. That if my biopsy last year was negative that I don't have Celiac. That my symptoms could be a sensitivity but that in accordance to my tests, my results were negative. I asked the secretary to mail the results. .. aND I'll let you know more specifically what they looked at. /:

[Maddi]

That the IGM is elevated bUT not too bad. That could be bc of a virus. But then why do I get better off gluten? Why have I lost weight? Ughh.... he tested me for Espstein barr virus today. I doubt I have that bc my bf is fine.

[Maddi]

This is what i found online: Increased numbers of plasma cells in the intestinal mucosa produce IgA, IgG, and IgM antibodies directed against grain peptides and connective tissue autoantigens (Open Original Shared Link). The antibodies are secreted as secretory IgA into the intestinal lumen and are also detectable in serum (Open Original Shared Link, Open Original Shared Link). 

 

​So IGM antibodies are involved? But they should be converted to IGA? SO CONFUSED. I also found this: 

 

Gliadin IgA + IgM antibodies. IgA antibodies are used to screen for gluten intolerance. However if IgA antibodies are low due to weak immunity, another type of antibody called IgM will be high. Screening for both gives a more accurate view of immune status and thus test results.

 

 

I know he tested me for IGA but i dont know if it was total IGA. Ugh I was so nervous about my results .. he did talk aboput IGA deficiency could be the cause of a negative Celiac IGG result and that I could be tested for that?? but I can't remember if he said he tested me for TOTAL IGA!??? I needed my brain to work today like seriously!!!!

[nvsmom]

Immunoglobulin A and Immunoglobulin M are just measures of the immune system activity. They are not celiac tests. IgA and IgG are parts of the immune system involved in celiac disease testing; IgM is not.

 

Naturopaths will often do food sensitivity tests based on the IgG part of the immune system.  These are not celiac disease tests either.  I know of a celiac who had perfectly normal tests for wheat and gluten sensitivity, but then I know others who had great health improvements after cutting supposedly problem foods from their diet.... I don't know how helpful these tests are.

 

If you want to get blood tested for celiac disease, these are the tests:

• ttG IgA and tTG IgG (tissues transglutaminase)
• DGP IgA and DGP IgG (deaminated gliadin peptides)
• EMA IgA (endomysial antibodies)
• total serum IgA - this is immunoglobulin A and it is just a control test, and not a celiac disease test.
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less relaible test largely replaced by the DGP tests.

If you have had a negative biopsy, chances are good that you don't have celiac disease, although up to 20% of biopsies can give a false negative result.

 

I'm afraid there is no medically accepted test for non-celiac gluten sensitivity (NCGS) beyond a positive response to the gluten-free diet.

[Maddi]

Thanks so much for your response. The more I read and the more I listen to the symptoms of gluten sensitivity/Celiac the more convinced I am that I have either of the two. I have two questions.

1. I barely had any symptoms last year in August when I had my biopsy. I only had a pinching pain next to my belly button and a lottttt of gas and excessive hunger and tiredness. Fast forward to 6 months ago. I had reallyyyy bad stress which I first noticed some bulky stools with a lot of undigested food (first time ever) then I started to get depression which then started having anxiety and extreme panic attacks for the first time in my life. Well I took b vitamins, I walked, my anxiety got a bit better (no more panic attacks) BUT it never went away completely. I was still having anxiety every day. Well then I started having weight loss, dry skin, confusion, dizziness, headaches, joint pain, severe GERD, insomnia, bumps on my arms, extreme fatigue (I'm not lying when i say that i thought i was dying), severe acne (cystic acne, on my face...my neck...my back...) Well you get the point. Now I've eliminated gluten (treating myself as if I were Celiac)... my insomnia is gone, my anxiety is 100% gone, my palpitations are gone, my fatigue is goneee (this has made me the happiest bc it was really deilitating... I thought I'd pass out or drop dead at any moment) This is week 3 (longer but I've made mistakes) being gluten free. My question is could it be that I was maybe sensitive to gluten last year or just starting to have Celiac and that's why my endoscopy was negative? They only took 3 biopsies of my duodenum by the way. --.--

2. Does NCGS cause weightloss? That's honestly one of my main concerns.

I know gluten affects me. I would just like a diagnosis. As soon as I consume gluten I get anxious, severe tummy ache, dizziness (I feel drunk), during the night I can never sleep when I get glutened, I wake up with hot flashes and the next day I'm extremely fatigued and I have a headache that lasts for DAYS. And then i see mucus in my stools (sorry if tmi) I also seem to have Interstitial Cystitis (I've had numerous "UTI's" but the culture always comes back negative for bacteria. (Just started last year. Now I know if I eat too much acidic foods that I'll get intense bladder pain. /; So all my symptoms and reactions seem to be pointing to a gluten problem. I guess I just need reassurance. I don't mind the diet as long as I feel normal again. Thanks again. (:

[nvsmom]

1.... My question is could it be that I was maybe sensitive to gluten last year or just starting to have Celiac and that's why my endoscopy was negative? They only took 3 biopsies of my duodenum by the way. --.--

 

Most celiac experts say 6 is the minimum biopsy amount needed to get an accurate result; some say 4.  3 biopsies may not have been enough if damage was patchy, which it often is.

2. Does NCGS cause weightloss? That's honestly one of my main concerns. 

 

It can if you can't eat like you should or the inflammation is affecting your digestion.  There are no certainties when dealing with NCGS and celiac disease.  I'm a celiac who holds on to weight.  When I first went gluten-free I lost almsot 15 lbs, and I was eating gluten-free substitute (junk) food.

[Maddi]

I really do appreciate your responses because I feel so tired of being sick and then also tired of not being listened to. I'm 26 and I just want to be feel healthy. I guess I just have to be patient. Now that I got my period I'be been fatigued on andoing off (but not asure bad as before). /: And I have crazy leg cramps and weird feeling in my body, the best way to describe it would be this electricity running through my body. I can barely sleep!!!! And my leg cramps had disappeared and now they're back... grrreat. I'm having weird symptoms as if I've been glutened but the only thing I can think of was Sunday. I bought grass fed beef over the counter at Whole Foods... and they had other meats close to it that had seasonings or things that were breaded... but I don't know. /: Maybe it's just my period being weird. Bc honestly my fatigue had disappeared. I'll wait until my period is over to see how I react. I'm also going to buy multivitamins just in case I'm low on anything. Andddd I'm going to get some probiotics. Hopefully that'll help. I've gotten to much more support from this forum than with any doctor I've seen and oh I've seen more enough. This forum is amazing! You guys seriously know more about NCGS and celiac than most doctors! !!

[nvsmom]

The electricity could be a peripheral neuropathy. I've never suffered with that myself, but it is not an unusual celiac disease or ncgs symptom.  Unfortunately, symptoms dealing with the nervous system are often the slowest to improve and can take at least 6 months to start improving.

 

I can't remember, has your thyroid been checked?  Slowed digestion, constipation, dryness and stomach issues can be signs of hypothyroidism too.

[Maddi]

Yes, but the neurapathy had gotten better. I'm not sure if I was glutened by that meat. My bf also had me try Lindt's white chocolate which apparently can have cross contamination. This diet is very, very hard. My hot flashes had disappeared and now they're back. (Cross contamination?)

My GERD also started acting up again. I'm going to try to be a bit more careful.

Yes, I was tested for thyroid disease (twice in 6 months, full thyroid panel) bc my symptoms are so similar and because my grandmother's family all have hypothyroidism andddd my tsh is actually right in the middle of where it's supposed to be and my t3 and t4 were in range.

I think this is food related though because when I did the gluten challenge (only last a day...ha!) my symptoms got worse. And the next day always feels like I've been hit by a train.

[Maddi]

I'm so mad that I had that piece of chocolate bc I actually read the label before taking a bite! My bf even said it was just chocolate that it wasn't going to kill me...of course now he see's how I feel and has apologized... that he just wanted me to try it. /: It sucks that he would have to apoligize for that. From now on I'm determined to not assume or trust labels 100% since I would think they would have a warning stating that they use shared lines/machinery. I keep making too many mistakes lately. I was doing better when I was just eating at home and eating from packaged meat. Back to basics.