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I Got My Results Don't Know What To Do Next, Please Advise

tallypop

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tallypop Rookie
tallypop
Posted

I finally got my results, negative  for Celiac as I was expecting but they do seem to indicate something is wrong.

 

Anti-tissue transglutnase- 0.1U/ml 

 

Which is very negative

 

IgA- 1.52g/L

 

Serum Ferritin- 10ug/L  (which indicates iron deficiency)

 

Vitamin D- 17.9 ug/L (it should be over 50 which indicates vitamin D deficiency)

 

White cell count

 

Neutrophil count- 2.01 ( just outside normal levels) 

 

So I'm iron and vit D deficient and my white cell count is slightly out, anyone else had results like this for celiac?

 

My doctor thinks its just a vit D and iron deficiency combined with IBS that is making me feel so ill, I'm not so sure...

 

Should I push for more tests do you think?

 

This forum has been great, I feel really alone in this so I really appreciate your help :)

 

Tally

 

 

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

Hi Tally!

 

can you post the reference ranges? 

 

check out this link from Chicago Celiac Center:

 

Open Original Shared Link

 

Vit. D and Iron are two of the big ones.

 

a lot of people around here say IBS really stands for "I be stumped".  It's not really a diangosis, but a catch all term because doctors don't really know what to diagnose you with.

 

 

here's what I usually suggest testing wise

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg (You had the ttg iga.)

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing (If you can list the reference range for the IgA level that will help to determine if you produce enough IgA.)

 

 

check out page 12 in this report for testing information:

Open Original Shared Link

 

Hope this helps, and I would definitely push for more tests if I were you!

1desperateladysaved Proficient
1desperateladysaved
Posted

My health practitioner told me that unexplained low iron is often the first symptom to appear with celiac. However, I believe that other difficulties may cause low iron, such as a diet low in iron, or heavy blood loss.   I recall experiencing anemia symptoms 35 years back.  I got diagnosed with celiac after 30 years of undeniable symptoms.  Now, at 20 months gluten free, my iron levels pulled up to normal. .  Can you go ahead and do an endoscopy?  it would be nice to have definitive results.  I hope you will feel better soon!

nvsmom Community Regular
nvsmom
Posted

Ditto The previous posters, you only had one test and it does not catch all celiacs, and could even be invalid if you are IgA deficient - more testing would be helpful.  Keep eating gluten until you are done testing.

 

You wrote :

 

 

My doctor thinks its just a vit D and iron deficiency combined with IBS that is making me feel so ill, I'm not so sure...

 

Those are just descriptors of symptoms, none actually answer the question "why" you are feeling poorly. I would push for more tests.

 

Good luck. I hope you find answers.

tallypop Rookie
tallypop
Posted
  • Author

Thank you so much for your comments, I know I shouldn't self diagnose but its hard not to when your doctor says you have ibs... I ate pasta and garlic bread last night, this morning I have a lot of stomach pain had to rush to the toilet and I woke up in the night with hip pain/leg aches.

I will post the reverence ranges later today,I going to start a food diary as well I think.

Lirren Rookie
Lirren
Posted

I understand this entirely, tallypop! My doctor's first "diagnosis" for my abdominal pain was IBS, and they would not see or treat me again for a month and a half of agony. Then they did a biopsy and found lymphocytes in my small intestinal tissue, which is why I'm currently being tested for celiac. The endoscopy/biopsy would not have happened if I hadn't kept pushing for another look, so don't give up! And if your doctor is reluctant to consider other possibilities, it is ALWAYS okay to seek a second opinion.

 

Good luck!

 

Thank you so much for your comments, I know I shouldn't self diagnose but its hard not to when your doctor says you have ibs... I ate pasta and garlic bread last night, this morning I have a lot of stomach pain had to rush to the toilet and I woke up in the night with hip pain/leg aches.

I will post the reverence ranges later today,I going to start a food diary as well I think.

tallypop Rookie
tallypop
Posted
  • Author

Hi Tally!

 

can you post the reference ranges? 

 

check out this link from Chicago Celiac Center:

 

Open Original Shared Link

 

Vit. D and Iron are two of the big ones.

 

a lot of people around here say IBS really stands for "I be stumped".  It's not really a diangosis, but a catch all term because doctors don't really know what to diagnose you with.

 

 

here's what I usually suggest testing wise

 

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg (You had the ttg iga.)

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing (If you can list the reference range for the IgA level that will help to determine if you produce enough IgA.)

 

 

check out page 12 in this report for testing information:

Open Original Shared Link

 

Hope this helps, and I would definitely push for more tests if I were you!

I believe this is what you asked for

 

Anti-tissue transglutnase 0.00-7.00/ml

 

igA    0.87-4.12g/L

 

I'm back at the doctors on Monday, it seems never ending at the moment

 

Thanks for the feedback 

 

Tara

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      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
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