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

Starting To Go Crazy! Can Anyone Help?

chrislong2

Recommended Posts

chrislong2 Newbie
chrislong2
Posted

Hi,

HELP!!!

Anyone that can help me make sense of all this?

Here's the deal: I've done a variety of tests all while being on a gluten diet.

Gliadin IgG high 29.2 U/ml (ref: < 10.0)

Gliadin IgA normal at < 5.0 U/ml

Ttg IgA normal at < 4.0

Reticulin IgA normal at < 1:10 titer

Endomysial IgA normal at < 1:10 titer

negative biopsy from a GI endoscopy

I did immunolabs food allergy IgG testing and show a +4 reaction (the worst) to wheat, +2 to rye, +1 to barley, +1 to oat. For the record, I also had strong IgG reactions to milk, cheese, soy, eggs, and various nuts. Basically I'm allergic to FOOD! :(

So, at the end of the day, the only thing that has shown up positive relating to Celiac is the IgG tests.

I have spent hours and hours researching and I still don't know how to interpret this! Is there anyone that can give me any guidance (i.e. your opinion) on what this might mean or what I should do?

Here's my dilemna: I was hoping if I'm not celiac, but just have a gluten sensitivity (like I also do to dairy/eggs/soy/nuts) that I could then maybe go gluten-free for 6 months and then reintroduce. But I'm scared to do that given the experiences of others that have really had Celiac and tried that and by going gluten-free, their body got super allergic. I've read several reports on this board of people that got much more SENSITIVE to gluten by going gluten-free. So, I really don't know what to do. Anyone?

Thanks so very much! :)

Chris

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

you should get your Total Iga Serum tested. if you're Iga low or deficient- that would explain the "normal" on your Iga tests.

tarnalberry Community Regular
tarnalberry
Posted

exactly what cassP said. without knowing your total IgA, those "negative" IgA results can't tell you anything - positive or negative.

Skylark Collaborator
Skylark
Posted

I'll "third" that. I was wondering the same thing about total IgA.

Are your symptoms from wheat allergic or delayed celiac-type reactions?

Simona19 Collaborator
Simona19
Posted

I'll "third" that. I was wondering the same thing about total IgA.

Are your symptoms from wheat allergic or delayed celiac-type reactions?

Hi Skylark! What do you mean by delayed celiac-type reactions? Are you talking about the skin test?

Skylark Collaborator
Skylark
Posted

Hi Skylark! What do you mean by delayed celiac-type reactions? Are you talking about the skin test?

What does gluten do to you when you eat it, and how fast?

chrislong2 Newbie
chrislong2
Posted
  • Author

I'll "third" that. I was wondering the same thing about total IgA.

Are your symptoms from wheat allergic or delayed celiac-type reactions?

Thanks for your help/thoughts everyone!

Total IgA (which I didn't see initially as it was on a different sheet) - listed as "IGA, SERUM" - I assume that's the total - is 108, with the reference range given as 66-436. For the record, IGG is 814 (ref. range of 791-1643) and IGM is 54 (ref. 43-279).

I've got so many symptoms going on, it's hard to know what's what...besides wheat, barley, rye, and oat, I'm also highly allergic to dairy (cheese & milk), soy, nuts, rice, egg, and yeast. So it's hard to isolate what symptoms go with what. I have asthma and other allergies complicating all this too. Wheat on paper seems to be my "strongest" reactor but I can't point to any one symptom and say wheat definitely brings it on, so I guess I would say it might be more of a delayed reaction.

Can someone explain why total IgA is so important in relation to the individual Gliadin IgA tests?

Thanks! :)

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

because if your Total Iga was below the range- then your "normal" Iga results would be a false negative. But your Iga levels are normal.

all of your numbers look normal except that Antigliadin Igg.

i am no expert, and obviously our medical system are not experts either- there's still so much to learn about Celiac & Gluten Intolerance.

to me- your results dont look like a positive Celiac dx... or maybe not yet ??? the important thing is that your one result is high enough to show your body has a problem with gluten. and if you feel better on the diet- stick with it. one can be a non-celiac and still have a lot of distress from gluten. gluten can be linked to Crohns & Colitis... and it can cause neurological problems. Wheat Germ Agglutin CAN also wreak havoc on the body- so, i would say you should stay OFF gluten... and keep regular checkups with your doc.

the genetic tests are controversial to some & not diagnostic- but they can be a good piece to the puzzle.

Skylark Collaborator
Skylark
Posted

I've got so many symptoms going on, it's hard to know what's what...besides wheat, barley, rye, and oat, I'm also highly allergic to dairy (cheese & milk), soy, nuts, rice, egg, and yeast. So it's hard to isolate what symptoms go with what. I have asthma and other allergies complicating all this too. Wheat on paper seems to be my "strongest" reactor but I can't point to any one symptom and say wheat definitely brings it on, so I guess I would say it might be more of a delayed reaction.

Hmmmm....

Here's the thing. I was having all sorts of allergic reactions to dairy, shellfish, soy, and wheat. Mouth itching, asthma, rashes, GI trouble, plus delayed reactions to wheat, rye and barley. If I ate gluten-containing grains other than wheat I would have low-level GI trouble the next couple days. Wheat is just plain unpleasant, with an instant stomach-ache and big GI trouble.

Once I got off gluten, the rest of the allergies improved dramatically over the next 6-9 months. I did a little research, and people with damaged villi do not break proteins in food down well. That means there are more allergens left in the food. People with celiac also tend to make a lot more antibodies to foods in general, so the combination of bad digestion and lots of antibodies leads to intolerances. I had food allergies as a child, so my body has plenty of antibodies! Going completely gluten-free seems to have healed my gut, I digest food again, and all the food allergies/intolerances went away. I can even eat shrimp, which really surprised me.

You mention losing natural desensitization, and yes I'm pretty sensitive to wheat now. My childhood wheat allergy seems to be back and I get rhinitis, asthma, and sneezing now along with the GI problems. For me it was a pretty good trade though, once I figured out how many problems wheat and gluten were causing for me. I have one food (gluten) that really messes me up, but I can eat ANYTHING else happily.

By the way, I should add that I had a LOT of celiac symptoms, like GI trouble, canker sores, thin tooth enamel, ridges in my nails sometimes, fatigue, depression, autoimmune thyroid disease and carpal tunnel on top of the allergies.

chrislong2 Newbie
chrislong2
Posted
  • Author

Thanks so much - cassP and Skylark - your info was very helpful to me. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,921
    • Most Online (within 30 mins)
      7,748
    Rusty49
    Newest Member
    Rusty49
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.