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Unsure- Symptoms


Soakesie

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Soakesie Newbie

I am a 15 year old girl, and for almost two years now, I have been experiencing bad stomach cramps, diarrhea, and sometimes headaches immediately after eating. It usually happens almost instantly after finishing a meal- within 5-10 minutes. These symptoms are always together, yet very inconsistent. Once it happens, it happens all day, but may not happen the next day. Constipation is also apparent at times. All symptoms seem to have some (but still not a consistent) link to my menstrual cycle. I have gone to the doctor three times- once to tell him what was wrong, another to get an ultrasound, and a third for him to tell me he doesn't know what is wrong with me. I have tried cutting out lactose, to no avail- it was very hard to completely take away all dairy. I have not tried gluten free yet because it seems even harder. I have tried a food journal, for only 16 days and stopping, because it is hard to judge pain correctly when you're thinking about it too hard. I just know it hurts. You know? Could this be a mild case of Celiac disease? Are there tests my doctor can perform to decide? How should i move on from here? Help!


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1desperateladysaved Proficient

I am sorry you have to suffer like this.  I am glad you are searching for a root to your struggles.  You may be on the right track checking out celiac.  It would be good to find out for sure if you have it.  In order for the tests to be accurate, you must be eating gluten.  Good thing that you haven't tried removing it yet.  Here is the list of tests to run:

 

I believe I copied this list of tests from Guest134:

 

Total serum IgA- This has nothing to do with celiac however if you are low in this than all of your IgA based tests will likely be false negative
Deamidated Gliadin IgA- In IgA sufficiency this is the most accurate test on your body's response to gluten ingestion, if this is positive your body is having a negative reaction to the consumption.
Deamidated Gliadin IgA- Similar to it's IgA counterpart but particularly useful if you are IgA deficient.
Tissue Transglutaminase Ab- This is a marker of damage, if this is elevated your intestines are damaged and celiac is most likely the cause (about 95-98 percent specific to celiac)
Endomysial Ab- Another marker of damage that is extremely specific to celiac

 

I know it seems overwhelming to avoid certain food groups, but to get relief from the pains and struggles, it is well worth it.  I have often been disappointed to cut out foods, but have never failed yet to find a substitute that I really like.  It can be done.  Instead of dairy, I use coconut milk, almond milk, or homemade nut milk.  If you don't like one, keep trying others.

 

Are your parents supportive?  It is nice to have someone sort through this with you.
 

powerofpositivethinking Community Regular

Welcome!

 

get a complete celiac blood test panel done.

 

that consists of: 

 

DGP iga/igg

TTG iga/igg

EMA

Total iga serum-this is a control test to make sure you are not iga deficient, and if you aren't it will validate the other iga results

 

good luck!

 

Edit:  Ditto to what 1desperatelysavelady said!  The only thing I did was change the second Deamidated Gliadin to igg based.

 

 

"Total serum IgA- This has nothing to do with celiac however if you are low in this than all of your IgA based tests will likely be false negative
Deamidated Gliadin IgA- In IgA sufficiency this is the most accurate test on your body's response to gluten ingestion, if this is positive your body is having a negative reaction to the consumption.
Deamidated Gliadin IgG- Similar to it's IgA counterpart but particularly useful if you are IgA deficient.
Tissue Transglutaminase Ab- This is a marker of damage, if this is elevated your intestines are damaged and celiac is most likely the cause (about 95-98 percent specific to celiac)
Endomysial Ab- Another marker of damage that is extremely specific to celiac"

tommysmommy Newbie

wow, yes...u have every reason to suspect celiac. Don't get overwhelmed by the blood test details just ask your doctor for a celiac blood panel. 90% of people who have it dont know it & doctors rarely test for it - you might have to really push for it (its so ridiculous, doctors had no problem ordering catscans & ultrasounds for my son but a $400 blood test was deemed extreme).

If its not celiac, there is still a chance that gluten sensitivity is the problem & there is no test for this besides going gluten-free to see how you feel.

It is really scary to think about giving up foods like pizza & bread...and really hard to do. But getting really sick minutes after eating is really hard too - much harder in fact! I have 3 kids (younger than u) who are living gluten-free & doing really well. And by the way, we've found some pretty good pizza & bread too!

notme Experienced

Could this be a mild case of Celiac disease? 

 

 

nope.  either it is or it ain't.  :)  good luck finding your answers

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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