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Is it celiac????

Sarah K.

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Sarah K. Newbie
Sarah K.
Posted

April 2013: Started feeling bad like a flip of a switch during the beginning of my 3rd pregnancy 

august 2015: negative biopsy and TtG blood test 

July 2017: negative TtG, IGA, EMA, etc 

October 2017: positive DGP (50)

november 2017: HLA DQ8 positive

do I have it or not?????

I've been gluten free since October and while my bathroom situation is better I am still extremely crampy  

 

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Jmg Mentor
Jmg
Posted

Hi Sarah and welcome :)

 

1 hour ago, Sarah K. said:

do I have it or not?????

 

You had a positive test, were you not given an endoscopy appointment? That's the usual next step in diagnosis?

Did you discuss going gluten free with your doctor? 

Sarah K. Newbie
Sarah K.
Posted
  • Author

I had a negative endoscopy already. I wonder if they missed it?

cyclinglady Grand Master
cyclinglady
Posted
3 hours ago, Sarah K. said:

April 2013: Started feeling bad like a flip of a switch during the beginning of my 3rd pregnancy 

august 2015: negative biopsy and TtG blood test 

July 2017: negative TtG, IGA, EMA, etc 

October 2017: positive DGP (50)

november 2017: HLA DQ8 positive

do I have it or not?????

I've been gluten free since October and while my bathroom situation is better I am still extremely crampy  

 

Which DGP was positive?  The IgA or IgG version?  What do you mean your IgA was negative?  This is usually an Immunoglobulin A test.  When used in conjunction with celiac disease testing, it acts as a control test.  Some celiacs are IgA deficient and therefore only IgG tests should be used.  How many biopsies were taken and where?  Do you have the GI and pathologist’s Reports?  The surface area of the small intestine is larger than a tennis court.  Easy to miss damaged areas.  Was the GI’s scope able to see intestinal villi?  Did you get photos?  Was H.Pylori ruled out?  Stomach issues?  

Celiac disease usually takes a year or longer to heal because of collateral damage, the difficulty in learning the gluten-free diet, avoiding cross contamination, etc.  Three months in is such a short time, though some heal that fast!  

What did your doctor advise?  

Jmg Mentor
Jmg
Posted
46 minutes ago, Sarah K. said:

I had a negative endoscopy already. I wonder if they missed it?

Well, you have a positive test, so assuming you do have it, you are still in the early days of the diet, expect to continue to see improvements ffor anywhere from 6-12 months after you first exclude gluten.

i found the first couple of months quite ropey, good days and bad days. The general curve was up but it wasn't always plain sailing...

You may want to look at what your eating, many suffer with dairy for instance and feel better after they cut it out . its also easy to slip up on the diet or get cross contamination. Check the stickies newbie thread on this forum for some good tips that may help with that. :)

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    • knitty kitty
      ttg iga high (646 mg/dl) other results are normal

      By knitty kitty · Posted

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
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      By Wheatwacked · Posted

      My TMJ ended when I lost a middle lower molar.  I had an amalgam filling from youth (1960s) that failed and the tooth broke.  I had what was left pulled and did not bother to replace it.  My bite shifted and the TMJ went away.  I just had to be careful eating M&M Peanuts because they would get stuck in the hole.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      Yes, I wondered about the units as well. That large number sure looked more like what we're used to seeing in connection with total IGA scores rather than TTG-IGA. The total IGA test is given to determine if you are IGA deficient. In the case of IGA deficiency, other IGA tests will b skewed and their scores cannot be trusted. Elevated total IGA can point to other health issues, some of them potentially serious, or it can mean nothing. But it doesn't look like you have celiac disease.
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