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kerrih

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  1. i had an endoscopy but it came back negative for celiac. i am chronically constipated and was wondering what types of reactions you had/have when you've been glutened.

    there are days i can eat pizza and feel fine. (i know i am not suppose to eat it but i generally get a rash on my legs when i do). sometimes i cant keep the craving down, lol!

    today i had a bag of cadbury mini eggs and felt SO NAUSEOUS about 10 minutes after eating them. now i didn't throw-up but i had a little diahrea.

    i know - TMI but i am really unsure as to whats wrong with me!

    i also sometimes feel a weird haze (like i am all foggy) after i had corned beef the other day. i wasnt sure if that was a gluten thing.

    I also had a negative biopsy, but positive bloodwork. The "gold standard" isn't so gold anymore. Now the most sensitive test for celiac seems to be the tissuetransglutaminase Ttg level in your blood. Mine was three times as much as it should be and an expert in Utah told me that something must have been misread or mistaken in my biopsy. With a level that high, he said I had to have celiac. You probably had the same issue with your biopsy. Sounds like you have more than a gluten sensitivity and if I am not mistaken, the rashes are related to celiac disease not gluten sensitivity.


  2. My mom went to IHOP yesterday w/ her dh and my brother. She said they had "corn cake pancakes" and they were gluten free! She said they tasted pretty good, too. So I called IHOP to see if this were true, and of course they wouldn't confirm. They told me to talk to the manager at the IHOP I go to. So, if you have an IHOP near you, call em up! They may have gluten-free pancakes there!!

    ptkds

    PS, the IHOP she went to was somewhere in the Beumont/houston area.

    I just went to IHOP and the corn pancakes are NOT gluten free. They have flour in them. I asked before I ordered. I figured it would need some flour to make them fluffy with the cornmeal.

    Kerri


  3. My mom went to IHOP yesterday w/ her dh and my brother. She said they had "corn cake pancakes" and they were gluten free! She said they tasted pretty good, too. So I called IHOP to see if this were true, and of course they wouldn't confirm. They told me to talk to the manager at the IHOP I go to. So, if you have an IHOP near you, call em up! They may have gluten-free pancakes there!!

    ptkds

    PS, the IHOP she went to was somewhere in the Beumont/houston area.

    Sounds great, thanks for the info. FYI IHOP puts pancake batter in their eggs. Who would have thought. Be careful when ordering eggs.

    Kerri


  4. So it's been a year since my dx, but I've still been sick a lot. Husband isn't sure it's celiac, we've talked about possible misdx, or other food allergies...what should i do?

    I am in a similar boat! I have also been gluten-free for a year and every now and then I get pretty sick. Maybe just unknown contamination, but could be another allergy that I am not aware of. I had a positive blood test, but negative biopsy. My dad also has celiac. My endocrinologist has discovered hyperthyroid and hypoglycemia. I have researched that it is common for people to have multiple autoimmune disorders. Keep me posted on your testing.

    Kerri


  5. Hello,

    Just wanted to share with you that I have been gluten-free for a year and I have had hypoglycemic issues. My endocrinologist says that it may be all the rice I am eating now. I eat rice noodles, rice cakes, puffed rice cereal (without malt of course). Just letting you know that rice will cause your sugar to drop suddenly and just as someone said before your entry, you need plenty of protein to balance it.

    Glad you are feeling better though.

    Kerri


  6. I had a positive blood test in late March during a physical. I stupidly asked for the test to be done since I had a family history. However I did have some symptoms but very mildly. I was scheduled for a Biopsy/Endoscope for early May and had been as gluten free as I could until then. The night before I went and ate at my favourite Pizza place here in Houston "Star Pizza." I ate a whole medium deep dish pizza and drank 2 pitchers of beer. My wife couldn't drink she is pregnant so I had her share too. I was fine the next day for my procedure. Went home and was fine. Got sick as a dog that night.

    Now having said that and been gluten free for 3-4 months I seem to have more issues now from accidental glutenings than I did when I was not on a gluten free diet. Apparently I am what is described as a silent celiac. My biopsy only showed mild irritation and atrophy. Like I said I only had loose stools a few times a year and no other major issues. Since I have been gluten free I have become more sensitive. Mostly I think I should have just left things well enough alone. I was not having major issues, and I was aware if I started to in the future then I would know the most likely cause. One bonus has been that I suffer from severe migraines, especially after being in the heat, I have not had one since being gluten free. Trying to decide if that is worth it or not.

    I plan on experimenting with a few things after my next Endoscope if my gut has healed up mostly. My next door neighbor is celiac. He drinks beer -- normal beer -- and doesn't react to it. He cannot drink wheat beer though. So I will give it a try. I will re-introduce oats in my diet completely. I do cheat on this one and have oatmeal for breakfast once in a blue moon. No reactions at all.

    When I do have a reaction is not as severe as the ones described above. I get pretty bad cramps and may or may not have D, no nausea at all. The cramps will leave my abb's sore the next day like I had a very heavy workout.

    I would look at like this. Its a Pavlov's dog scenario -- Cheat get sick and think your going die and that will pretty much kill that urge in the future.

    I am the same way with the post gluten-free diet ingestion of gluten. More severe symptoms now that I have been gluten-free.

    Agree with the induldging. You almost have to so you will not even want to look at the stuff again. It was donuts for me and I was sick for three weeks after having been gluten-free for 6 months.

    kerri


  7. I have been gluten free for a year and have had the disease for about the past 20 years of my life. I am 34 now. I was experiencing palpitations and shortness of breath just like you described and it turned out I have hyperthyroidism (which is another autoimmune disorder and sometimes these are all related). I am taking a medicine now to calm down my thyroid and I haven't had heart symp. since. My heartrate would get to 140 and I would almost pass out! By the way, diarrhea is also a sign of hyperthyroid and many people who have celiac also have thyroid problems as well. Bloodwork doesn't always show an abnormal thyroid level. You have to catch it at just the right time, probably when you are symptomatic.

    Hope this helps.


  8. Sounds like we are in the same boat! I have had "IBS" symptoms for about 15 years. Diagnosed with celiac a year ago, blood test positive, biopsy neg. I recently have had to see an endocrinologist for racing heart/palpitations and turns out I have hyperthyroid. My sugars have been dropping and the dr. is suspecting diabetes, but he also mentioned with a gluten-free diet the simple starches such as rice can cause sugar levels to drop quickly. I sometimes eat rice cereal in the am, rice noodles for lunch and rice with my supper. Lots of rice like that can cause hypoglycemic issues without having diabetes.

    Kerri


  9. I also work in healthcare and I had a positive test (at least that is what they determined). I had the red itchy blisters and the "bump" underneath my skin. I wonder if there is anything that could cause someone with celiac to react to. I researched after my test and didn't find anything. Let me know if you find out something helpful from others. I started the INH for the positive test and then stopped it because of side effects I was having.

    Kerri

    I had a TB Skin Test yesterday...I work in healthcare.....I am having a reaction...not a positive but an allergic type reaction. It iches ect. I had the test yesterday at 12 and starting last evening I started to get gassy and all day today I have the big D. Could this be Celiac related? I know you have to ingest gluten....so I didn't worry if the test had gluten in it. Is this possible????

    I'm pretty positive that I didn't eat gluten or get CC'd....this was the only thing I could think of....Any ideas??????

    PS Same thing happened last year prior to me being diagnosed!


  10. Well, fortunately I have not had the DH rash that goes with the celiac, but I have had all of those other issues you listed. One thing I wanted to suggest is for him to have his thyroid checked out. I was almost passing out as well and my heart rate would soar and pound. Turns out this autoimmune disorder of Celiac can cause problems with other systems as well. Thyroid is a common organ to be attacked by celiac.


  11. The TTG or tissuetransglutaminase result is most sensitive for diagnosing celiac disease. I had all normal results except for the TTG level. Yours shows 4 which is quite normal. Mine showed a number of 52. I had a negative biopsy, but most Dr.s will still consider me celiac. I have been on the gluten free diet for over a year and feeling much better. I am 34 yrs old and have had problems since Jr. High school. Hope this helps.

    Kerri