Jump to content
  • 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:
    Support Our Content
    eNewsletter
    Donate

Test results and advice?


Mgh1213

Recommended Posts

Mgh1213 Rookie

Hello everyone sorry if this is repetitive but I am a 26 year old female with hyperthyroidism, hypoestrogenism, severely underweight 88lbs  (lost 35 lbs)  just recently last week, found out that I have celiac disease. Panel is as follows: 

IgA - 144

Gliadin AB IGG - >160

Gliadin AbB IGA - >320

TTG IGA - >160 

Could someone tell me if the higher the number, does that necessarily mean it's any worse than the next person with the disease?? I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me. Also, I have not had a menstrual cycle in 5 years (was on Depo birth control shot for 3 yrs, been off for 2 yrs) would this celiac disease have anything to do with the lack of menstration? I have been on Hormone Replacement Therapy over a year now with no results. I have to get back to my old self by before I lose it forever...Thanks for the help. 

 

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
51 minutes ago, Mgh1213 said:

Hello everyone sorry if this is repetitive but I am a 26 year old female with hyperthyroidism, hypoestrogenism, severely underweight 88lbs  (lost 35 lbs)  just recently last week, found out that I have celiac disease. Panel is as follows: 

IgA - 144

Gliadin AB IGG - >160

Gliadin AbB IGA - >320

TTG IGA - >160 

Could someone tell me if the higher the number, does that necessarily mean it's any worse than the next person with the disease?? I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me. Also, I have not had a menstrual cycle in 5 years (was on Depo birth control shot for 3 yrs, been off for 2 yrs) would this celiac disease have anything to do with the lack of menstration? I have been on Hormone Replacement Therapy over a year now with no results. I have to get back to my old self by before I lose it forever...Thanks for the help. 

 

 

Welcome! 

Chances are your high results are due to celiac disease.  Have you had a gastroenterologist consult?  He/she can refer you to a dietician who can help you with the gluten free diet.  

Celiac disease can wreak havoc on so many different areas of the body.  It just does not affect the GI tract.  There is a good chance that the gluten-free diet will help resolve your hormone issues.  Are you taking medication for your hyper thyroid?  Have you been diagnosed with Graves Disease?   

Higher test result numbers do not necessarily correlate with higher intestinal damage.  Common sense though, seems to indicate that your severe weight loss might mean severe intestinal damage.  Only a GI can confirm that. 

In the meantime, read through our Newbie 101 thread located at the top of the "Coping" section of the forum.  

If you have not met with a GI yet, keep in mind that additional testing for celiac disease requires you to be on a gluten diet.  

Mgh1213 Rookie

Thank you for your response, it really helps to hear from others and I will check out the coping forum that you mentioned. I do have Graves Disease and have been on anti-thyroid medication for 2 years, I just recently started seeing an Endocrinologist (had been seeing normal MD prior) and they said my thyroid levels were good and suggested some gastro tests since I was still having other symptoms. This included the celiac panel that came back positive. They have not referred me to a Gastroenterologist but I assume that is next. I think I will wait to cut out the gluten totally, until further testing is done by the correct specialist. I'm hoping getting this celiac in line, will help the rest of my problems such as the hormones, as you said. Thank you again for taking the time to reach out. 

cyclinglady Grand Master

I have Hashimoto's Thyroiditis, but my Mom has Graves.  I have been both hyper and hypo.  Had crazy swings for a while while going through menopause and being undiagnosed with celiac disease.  My thyroid calmed down on the gluten-free diet.  My enlargement and nodules went as well.  Not sure if it was the gluten-free diet or simply reducing my immune response (inflammation)  by addressing celiac disease.  Does that make sense?  

In the meantime, you might consider eliminating most dairy.  Celiacs tend to be lactose intolerant --- at least temporarily unless you are genetically predisposed (as are some huge chunk of the world's population).  It could bring you some relief while you complete testing.  You might however, be one of the lucky celiacs who can eat all the dairy they want!  Throw in some veggies  and some healthy fats to help off set your weigh loss.  Your body is probably starving for nutrients right now, so make every bite count.  

 

Jmg Mentor

Hello and welcome :)

3 hours ago, Mgh1213 said:

I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me.

It can be scary and there's definitely a mental side to dealing with this which is at least as important as the physical. If available to you consider seeking out some counselling to help you process this. It was really useful for me, as were the people on this forum which is a great resource which you should use as much as you need to. 

And, easy to say, try to be optimistic! 

1 hour ago, Mgh1213 said:

I'm hoping getting this celiac in line, will help the rest of my problems

It may be that you've solved a huge health puzzle whilst you're still young and have lots of great years ahead of you, years which will be so much more enjoyable gluten free. Time will help you learn the diet and what at first seems impossible will become the new normal to the point where you won't have to think too much about it. We are an adaptable species and however hard it seems at the outset you will adapt and you will feel better.

Best of luck!

 

Gemini Experienced
14 hours ago, Mgh1213 said:

Thank you for your response, it really helps to hear from others and I will check out the coping forum that you mentioned. I do have Graves Disease and have been on anti-thyroid medication for 2 years, I just recently started seeing an Endocrinologist (had been seeing normal MD prior) and they said my thyroid levels were good and suggested some gastro tests since I was still having other symptoms. This included the celiac panel that came back positive. They have not referred me to a Gastroenterologist but I assume that is next. I think I will wait to cut out the gluten totally, until further testing is done by the correct specialist. I'm hoping getting this celiac in line, will help the rest of my problems such as the hormones, as you said. Thank you again for taking the time to reach out. 

I can guarantee you that once you get your weight back up to normal, your period will come back.  You sound really malnourished and if your weight gets too low, your periods will stop.  Don't panic.......I was down to about 92-94 pounds at diagnosis so you will be able to heal if you do the diet correctly and don't cheat. Once you start to feel better and your other problems are under control , you will find it easy to stick to the diet. Nothing beats health!  Good luck to you!

Mgh1213 Rookie

Thank you all so much for the encouraging words and advice, it has been the most help so far! @cyclinglady I have heard of others that have had thryoid issues improved with the gluten-free diet so that definitely makes sense! I think a lot of things will get better once the gluten is gone. And wow! That is a lot to deal with mentally emotionally, etc. going through menopause, and dealing with celiac and thyroid problems. Major props to you for maintaining a positive attittude..that is most admirable and reminds me I can do this!

@Jmg I have considered talking to a counselor, like you said, it would help to talk to someone and I have very grateful to have figured this out while I am still young, I'm ready to take control!

@Gemini Thank you for your encouragement as well, it helps to hear someone has gone through a similar process..doctors have made me feel like I am the only person in the world trying to gain weight so I am excited for the future! Thank you all again. 


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

    2. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    4. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,436
    • Most Online (within 30 mins)
      7,748

    LuluPanda
    Newest Member
    LuluPanda
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.