Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 In -- Celiac Or Something Else?

msharnoubi

Recommended Posts

msharnoubi Newbie
msharnoubi
Posted

Hi everybody.

Please excuse the terribly long post. Normally, I don't talk that much but just wanted to make sure to provide all the relevant information.

I need help with these test results please:

* IgA Quantitative:**********149 mg/dl*****Ref range: 70-400

* Anti Gliadin IgG:***********Negative******Ref range: Negative at serum dilution 1/40

* Anti-Endomysial (EMA) IgA:**Negative******Ref range: Negative

* Anti TTG(Endomysium) IgA:**Negative 3****Ref range: Negative-< 20 --- Weak Positive 20-30---Positive-> 30

The lab didn't return the Anti Gliadin IgA.

I had been consuming gluten normally my whole life. I just tried a gluten-free diet for 6 weeks then decided I should do the tests. Consequently, I returned consuming gluten (I didn't know I loved it that much) for 2 months before performing the above tests.

I don't think I can do any more tests like genetic screening or biopsy because I don't think they're available here in Egypt and if they are I don't think I can afford them right now. In fact, I'm not quite sure I can rely very much on the blood tests given that the lab's staff had to search for a while in their manuals before finding the tests not to mention the contradictory answers I received on the availability of the tests when I contacted different branches of the same lab!

In any case, based on these results, should I make the Anti Gliadin IgA or are the above tests enough?

Now the important question, should I believe my physician in his diagnosis of IBS or is it celiac or should I consider something else?

To help answer the above question, please allow me to briefly sketch my condition:

* Male, age 39

My major symptoms are:

***Mental & psychological symptoms:

* Fatigue and lack of energy that leads to increased sleep. (Frequent.)

* Somewhat weakened mental abilities (i.e. memory, alertness, concentration, creativity,...). (Frequent.) All the people around tell me they don't notice them but I do.

* Low grade depression. Personally I'm convinced it's due to the above mentioned points.

***Physical symptoms:

* Gazes, bloating, abdominal fullness. (Frequent but not very bothersome.)

* Low back and joint pain. (Infrequent.) Only when I eat some foods coupled with stressed

* Lactose intolerance

* Heartburn, dyspepsia. (Not very frequent and also not very bothersome.)

* Chest pain. (Infrequent)

* Rhinitis, blocked nose. (Nearly always)

* Abdominal pain if I'm constipated for more than 4 days which doesn't happen a lot because I take laxatives the 3rd day.

***Diagnosis:

I've been diagnosed by physicians as having IBS by some and Dysthymia by others. In addition, I've personally considered other conditions on my own; most notably CFS but decided it wasn't very probable especially because I don't have low blood pressure and I feel better after exercising.

I'm not very troubled by the GI symptoms and don't mind living with them. However, I would be very happy to find relief from the mental symptoms. Although, in point of fairness, I have to state that I'm currently very happy and very grateful, thank God. But we can always make room for more happiness. :)

After knowing about celiac and considering I could have it, I started paying attention to how I react to gluten. I found that eating gluten doesn't change my symptoms unless I eat too much. However in this case, I'm not sure if my symptoms are due to gluten or to eating too much especially that eating too much of a lot of foods can give me similar or worse symptoms (milk and soy products for example).

So any advice is appreciated.

Thank you

Mohamed

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

Celiac.com Sponsor (A8-M):


nora-n Rookie
nora-n
Posted

Hello, I think you posted before asking about which tests to get, or was it someone else from Egypt?

Now the first test was just to check if IgA type tests (any tests based on IgA) are valid. Your total IgA is somewhere in the middle.

The other tests are the right ones for celiac too.

It happens they are negative (but the ttg test does have a number, it is not 0)

I am sure they ahve the biopsies in Egypt, those are quite basic. Doctors surely do biopsies in the esophagus, stomach and duodenum and the other way round all the time. It takes just a few minutes and here in europe only small children are sedated, we grown-ups get it awake.

The time off gluten very likely has made it difficult to get some definite blood test results....it is quite common. If you still suspect celiac and want a diagnosis, you will have to consume gluten for some more weeks and then the TTG test would be enough i think , since it is already in teh rising. Some people need several tests until they turn positive.

You know the blood tests are calibrated to only show positive when there is significant villous damage, the blood tests are designed to be a bit insensitive....(because the biopsy is the gold standard so they absolutely do not want any positives unless the biopsy is positive...)

Sso you can either go on eating gluten adn take the TTG IgA test again in a while, and maybe even repeat it, or jsut try gluten-free, totally gluten-free for a year or two and see if things improve.

For other stomach issues, by the way, there is this old diet stricter than gluten free, older than the celiac diet, the SCD diet. It even cures Mb.Crohn and colitis. ssome celiacs need to be on that one, plus the crohn-colitis patients. Of course main stream medicine does not know anything about the SCD diet but it is really quite old, older than gluten-free.

I know that Egyptians have a lot to do with Italy, and Italian doctors are very aware of celiac disease. All children are screened for celiac there. Are there some italian doctors by chance in egypt? Can you go there for holiday? Can you take contact with the italian celiac society ? Maybe there is one egyptioan doctor who has studied there?

Added: with your normal IgA, the celiac ttg self-test could be just as good as the hospital test. It sells in some countries in Europe in some pharmacies and by mail order. You can take the test at home after some more weeks of gluten to see if it starts turning positive. Then the hospital test shouls be positive 8unless they have a very very high cutoff adn need to adjust it down, since the self test developed by Matti M

msharnoubi Newbie
msharnoubi
Posted
  • Author

Hi and thank you for your reply.

Yes, you're right we have biopsies here but as most doctors aren't familiar with celiac, it won't be of great value. How can I trust his diagnosis when most probably he doesn't know what effects it has on the intestines and what to look for?

As for Italy, going there would be fun I guess but unfortunately, I can't do it.

Mohamed

Jestgar Rising Star
Jestgar
Posted

If eating less gluten (or soy or milk) makes you feel better, try eating none of these for a month, then add them back one at a time. You can decide, based on whatever reaction you may or may not have when adding them back, whether or not you want to keep them in your diet.

You are in charge of your health, and you can make an informed decision about what you want to eat.

tarnalberry Community Regular
tarnalberry
Posted

The dietary response IS a valid test (and many doctors will accept it as such, but this practice varies widely). If the diet makes you feel better, I say go gluten free. If it doesn't (and by that, I mean if three months gluten free makes no difference), then you might have "IBS". BUT, as far as I can figure out, IBS is still caused by the immune system in the digestive tract overreacting to something. Maybe it's not gluten, maybe milk, or soy, or some other food(s). So, you may need to do some experimenting with your diet to figure out what keeps YOUR system happy, regardless of what other people think is normal to eat.

msharnoubi Newbie
msharnoubi
Posted
  • Author

Thank you all for your valuable feedback that helped me make up my mind.

I think I'll partly do as "tarnalberry" said and will start an elimination diet and will let wheat be the last item to add so as to make sure I've been more than 3 months gluten free and try to figure out how things will go.

But I guess I'll start the diet the first day of the new year. Now I'll have a break with a lot of delicious gluten :)

May be if I get to something, I'll post it here just in case someone has a similar condition.

Wish you all a healthy life, happiness and especially peace of mind

Mohamed

Archived

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

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


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...