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Is It Celiac?

Happyw5

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Happyw5 Explorer
Happyw5
Posted

HI, I am 32 years old and I have 5 children in 7 years. After my 3rd baby I was extremely sick (back in 2003) I had every test done. I had a colonoscopy, endoscopy, barium x rays,ct scans, stool samples, blood tests. My eosiniphill count was 30% which is very high. I finally asked if I could see an allergist because my family has alot of allergies.(My sister is allergic to all cinn, cloves, and other spices. My brother is allergic to anything with feathers(turkey,duck, etc) and anything with fuzz (peaches) and peas) I went to the allergist and she said I was allergic to peanuts, I have Gerd, and IBS, and Oral allergy syndrome. I felt great after giving up peanuts. Two babies later in 2007, I started getting the same symptoms again. I fell asleep after eating and my eosiniphill count went up again. I went to the allergist and I was allergic to wheat. I give up wheat for a year and never felt better. My insurance changed and went to a new dr. He ran new tests and told me I would benefit from allergy shots, which I have been getting for 2 years, and has greatly improved my outside allergies. He told me I could try to eat wheat (my celiac test was negative) and if it didn't bother me, then I could have it. (Thinking that it was linked more to my "grass" allergy, the allergy shots may help) Well I started eating wheat and I was fine. Now for the last year and half I go on wheat and off wheat, not knowing if it bothers me, and not wanting to give it up! Since August I have noticed alot of things going on with me.

*I put on 30 pds in a month (and have always been fine with weight--9 months preggers I was 148 pds with all my kids) and now I weigh anywhere from 161-167 pds. I do yoga, I workout at the gym 4 days a week and with 5 small kids and 5 dogs, I am very busy..

*I have tingling in my fingers and hands through out the day and night

*I have had vertigo since my last baby was born and it seems to be getting worse

*I lose alot of hair

*I am constantly itchy--everywhere--including my scalp and face--and elsewhere

*Have had a rash on my arms and chest since summer (gets worse in heat or shower) I think it is called keratosis pilaris

*My ankle hurts and I had plantar fasciitis a month ago

*I have always been regular with menstrual cycles and now only get them every other month

*I have had some very bad reactions lately with pizza, and now that I am trying to eat alot of wheat, so I can get tested, I have noticed a very blah stomach ache constantly and just a feeling of exhaustion.

I went to see an encronoligist about my thyroid (my mom and sister both have a hypothyroid) she said mine was fine and my symptoms could just be in my head. She said if I had a pill to make you skinny, then I would take it!

I am going to my allergist tomorrow and he has always been so helpful, hopefully he will help me. I just wanted to see if these symptoms were typical of Celiac or a gluten sensativity. I have googled it, and I get so many different opinions, I don't know if I am on to something of just imagining it! Thanks for any advice...

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eatmeat4good Enthusiast
eatmeat4good
Posted

I would vote yes yes and yes. It all fits. Even if you test negative for Celiac, as you wrote, it could be gluten intolerance. IF it is, then the reason you haven't had relief is the on again off again wheat allergy you have been treating. I hope you get tested quickly and you can go off gluten and then start avoiding cc also. Once it is all out of your system you would then recover slowly and steadily if that is the problem. I too gained weight very very fast before I knew the problem was gluten. It was unbelievably fast and never left until I went gluten free. I think it is related to malabsorption, swelling and inflammation. With all those little ones, I hope you find your answer fast. It certainly all fit Celiac as I read your post.

Happyw5 Explorer
Happyw5
Posted
  • Author

Thanks for your response. I went to my allergist today and I wanted to marry him!!! He was so nice and understanding. Even if he thought I was crazy, he helped me. He is giving me a full celiac panel, gluten allergy test, thyroid antibody test, and a kidney and liver function test. He said even if the gluten and celiac test come back negative, that they are not always accurate and I should try the gluten challenge. He said it could also be my gall bladder. The results will be in the end of the week, so I will let you all know.

eatmeat4good Enthusiast
eatmeat4good
Posted

That is so wonderful! You had a good experience with a Dr. Marry him! Marry Him! If you can't do that, at least tell him how wonderful he is for covering all the bases for you and for following up on all the avenues. I have never met a Dr. like that. I had 26 Dr.s and not one of them would consider anything but depression inspite of the sores and the fact that I had gained from 120 to 180 in 6 months. Unbelievable. I was stuck with fibromyalgia as a diagnosis...without ruling anything else out.

Only when I found this site did I realize what was wrong and I am in the 4th month and my muscles are finally wanting exercise and my brain is working find. I am given back to myself. I want to marry Scott. But I hear he is already married! <_< But you can be sure I know who to thank for my rebirth when I get to the guy above...Scott is the man. I would have been lost forever without this information, this site, and this support. I have a deep gratefulness I carry with me wherever I go. And I have gotten 10 people to go gluten free and found that it helped their various problems without Dr. intervention or blessing. So the information and miracles are being compounded and growing exponentially. I hope it works that way for you too sweetie. I will look for your update. :)

Happyw5 Explorer
Happyw5
Posted
  • Author

I did get part of an update. The only celiac test I got back so far was Iga to gluten and it was 0.35, which is negative apparently. Other tests will be back next week.

I did find out that I have an allergy to wheat and egg. My nut allergy came back positive, we already know I am allergic to peanuts, but I eat alot of almonds and I eat that amazing hazlenut spread, so he is going to check those out individually to see if I am reacting. I also found out that I have high antibodies to my thyroid, which is probably why I am so itchy. I started the gluten free diet (Started Wednesday) and I am feeling better. I definitely need to go wheat free, but should I just stick with gluten free?

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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