Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Doctor Only Ran One Test?


targetsgirl

Recommended Posts

targetsgirl Newbie

Hello, I am new here.  I have been "lurking" for about a week, as I waited for my blood test results.  They are in today.  I can view test results online.  From what I understand from my incessant googling and lurking on this site, a full panel should be ordered to diagnose celiac disease.  I see that my doctor only ordered one test.  It is the TTG antibody, IGG.  My result was 1.  I guess this is good, since no one really wants celiac, but I'm afraid to trust the diagnosis if more tests should have been ordered.  Can anyone tell me if I need to press for more testing or if this can send my on my merry bread eating way?

 

A bit of background.  I had the testing done because I have a strong family history of celiac.  Paternal grandmother, two paternal uncles, and a few cousins have been recently diagnosed.  I have been suffering with a lot of hormonal imbalances, frequent periods, tingling hands, anxiety, consitipation/diarrhea, gas and bloating for years. 

 

Thanks in advance for any advice!

 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Hello, I am new here.  I have been "lurking" for about a week, as I waited for my blood test results.  They are in today.  I can view test results online.  From what I understand from my incessant googling and lurking on this site, a full panel should be ordered to diagnose celiac disease.  I see that my doctor only ordered one test.  It is the TTG antibody, IGG.  My result was 1.  I guess this is good, since no one really wants celiac, but I'm afraid to trust the diagnosis if more tests should have been ordered.  Can anyone tell me if I need to press for more testing or if this can send my on my merry bread eating way?

 

A bit of background.  I had the testing done because I have a strong family history of celiac.  Paternal grandmother, two paternal uncles, and a few cousins have been recently diagnosed.  I have been suffering with a lot of hormonal imbalances, frequent periods, tingling hands, anxiety, consitipation/diarrhea, gas and bloating for years. 

 

Thanks in advance for any advice!

 

With familial history alone, you should have a complete celiac antibody panel.  Add symptoms and yes - you should absolutely have a complete panel.  If all those are negative, removing ALL gluten for at least three months (six is better) to monitor symptoms would be the next step.

 

That your doctor ordered only a tTG-IgG is strange as it is quite common for docs to order a single tTG-IgA for screening -- which is not sufficient either...but is common.

 

Here are the rest of the tests you need:

 

Total Serum IgA

tTG-IgA

EMA-IgA

DGP-IgA

DGP-IgG

 

and if they haven't been run recently:

 

CBC, CMP and nutrients -- B12, D and Iron (minimally) -- my celiac doc adds more Bs, K and other minerals to the list.

 

Good Luck and do give the diet a strict trial once ALL of your testing is complete :)

Link to comment
Share on other sites
moosemalibu Collaborator

I second what Lisa wrote. Get the full panel done and then trial the diet if those are inconclusive.

Link to comment
Share on other sites
targetsgirl Newbie

Thanks guys.  My gut (no pun intended :P) was telling me the same thing.  I kind of have a love/hate relationship with this doc anyway.  I have had problems anytime I initiate testing (as I did for celiac) or when I ask for more conclusive testing (as I have done for hormones and thyroid) in the past.  I know my body, and something is not right.  Would you recommend a specialist, or just find a new GP?  I live in a very rural area, and my options may be limited...

Link to comment
Share on other sites
1desperateladysaved Proficient

Were you eating gluten when the blood was drawn?  Sometimes they have taken more blood than necessary, so that you could request the rest of the panel without drawing more blood.  If you are not eating gluten, the test would be false negative.

 

I hope you get definitive results soon.  You do have some symptoms and family history.

 

If and when you are all done with all the tests.  It would be good to try a gluten free diet and record the changes in your symptoms.

 

D

Link to comment
Share on other sites
targetsgirl Newbie

I had been eating a gluten filled diet for about two weeks when the blood was drawn.  Before that, I had been on a "limited" gluten diet for about a year.  I avoided it as much as I could, due to gastro problems and feeling lethargic when running(I'm a long distance runner),  but I did splurge maybe once or twice a week on pizza or bread for a sandwich.   My doc said that should be enough gluten to run the test.  She ran some other blood tests while I was there and found some hormonal problems, elevated TSH (but not enough to treat?) and iron deficiency.  I don't think she tested any other nutrients. 

 

I'm really beginning to see why so many people are undiagnosed!

Link to comment
Share on other sites
cyclinglady Grand Master

What was the TSH value. The range is broad and it is best to be between a 1 and a 3, with closer to 1 being best. Your other thyroid values? Were you tested for antibodies? Anemia (low ferrtin) and higher range TSH levels are always the culprits when my running becomes sluggish.

Mt celiac disease blood tests indicated a mild positive, but my intestinal damage via biopsy showed moderate to severe damage. You might not have been eating enough gluten.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Eating gluten once per week or less for nearly a year would require a full gluten challenge of twelve weeks of daily gluten (one slice of glutenous bread is enough).  Two weeks would not be long enough to assure accurate blood results.

Link to comment
Share on other sites
targetsgirl Newbie

My TSH was 3.5.  Free T4 was .99.  She didn't check any others, despite my request.  Ferritin was 10.  I have a history of iron deficiency anemia, so that wasn't a surprise.  She also tested some hormone levels, but those results aren't all in.  Prolactin was quite low, so I'm guessing estrogen will be high...  A cousin recommended her doctor to me, so I will  call and try to get in with someone who is a little more thorough than current doc.

 

Thanks for the advice.  Folks on here have already asked more questions than my doctor did.

Link to comment
Share on other sites
GottaSki Mentor

Thanks for the advice.  Folks on here have already asked more questions than my doctor did.

 

Sad...but not uncommon  :(

 

Good luck...let us know if we can help with the next doc :)

Link to comment
Share on other sites
cyclinglady Grand Master

Anemia/low ferritin was my only symptom. I went in for a routine colonoscopy and the GI suggested celiac disease. I was shocked! Had all that intestinal damage. Your ferritin is way too low! There is a reason for that iron deficiency and it is not always your period. Good luck and welcome!

Link to comment
Share on other sites
cmc811 Apprentice

Not to hijack original poster's thread, but what should ferritin be? Mine was labeled as "normal" at 17.8 with a standard range of 12.0-306.0

Should it be closer to mid-range/upper range? Where does transferrin fit in? Mine was actually above the normal range. I've tried googling and just confused myself more and unfortunately my hematologist wasn't much help.

Link to comment
Share on other sites
frieze Community Regular

an elevated transferrin may indicate an iron def. anemia....

Link to comment
Share on other sites
cmc811 Apprentice

an elevated transferrin may indicate an iron def. anemia....

That's what I thought but hematologist said my anemia wasn't iron def.

 

High Transferrin

Very low end of normal ferritin

low hemoglobin

low hematocrit

low red blood cell count

Iron binding capacity 2  points from being high

 

It was my understanding that was all typical for iron def but maybe because my actual iron serum was normal, that is what he was going off of?

Link to comment
Share on other sites
frieze Community Regular

did the doc actually say anemia? if so, what kind did he classify it as?  don't forget, low magnesium can produce an anemia as well.

Link to comment
Share on other sites
cmc811 Apprentice

I got the "unspecified anemia" diagnosis. My PCP referred me to the hematologist to have it further explored but he never figured it out either. He wanted me to keep coming back every 3 months but after the 3rd visit of him saying the exact same things and not reaching any further conclusions I quit going.

 

So, yes I have officially been diagnosed with anemia but I take that with a grain of salt since it can't be pinpointed. Maybe my numbers just naturally run a little outside the ranges, but that is normal for me?

 

Interesting about magnesium.....I can't find in any of my lab reports where magnesium was even checked.

Link to comment
Share on other sites
cyclinglady Grand Master

I am not an expert in anemia, but my body was able to use iron, but had a hard time storing it due to the celiac disease. I guess they look at hemoglobin levels below the range. My hemoglobin level has always been slightly below the normal range due to a genetic anemia called Thalassemia (tiny red blood cells, out of range MCV). Luckily, my body has compensated for it.

So I had two anemias (still have the one) but because of heavy periods, the doc would prescribe iron and my ferritin levels would come up from a 2 to let's say a 22, but my next heavy period would hit and it would drop my ferritin levels down again to a 2 or 3. I could never get ahead until my GI diagnosed the celiac disease.

I am now through menopause and am no longer iron deficient. I do think a level of 17 is too low, but there is danger of being too high. Heavy periods and being an athlete can suck up a lot of iron.

Link to comment
Share on other sites
cmc811 Apprentice

My hemoglobin is always low, as is my hematocrit and rbc. My MCV is slightly high, but B12 and folate are fine. I did notice my b12 is lower with each check though and is now pretty close to the low cutoff. I wonder if I'm becoming b12 deficient?

 

Also, in regards to periods, that is certainly not my problem. I have PCOS and go months between periods if I'm not on bc pills to regulate my cycles. Many of my "anemia" investigations took place during a time when I hadn't started the pill and hadn't had a period in 2-3 months.

 

Thanks for all your info! It's so frustrating because I have many lab values just slightly out of range, but since they don't seem to be getting worse the doctors just shrug and move on. Unfortunately I don't feel well and no one can figure out why :( And with labs that are close to normal no one seems to think the abnormal values have anything to do with my symptoms.

Link to comment
Share on other sites
cyclinglady Grand Master

Even though I was never vit. B-12 deficient, I took a sublingual version as well as magnesium to combat some neuropathy I was experiencing due to celiac disease or diabetes. It seemed to solve this issue, but who knows? It did not hurt me! It might be with investigating in your case.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,504
    • Most Online (within 30 mins)
      7,748

    Celeste Small
    Newest Member
    Celeste Small
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
×
×
  • Create New...