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Kittydanger

Heart problems

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So, let's see if I can summarize this in a succinct way. It's a long story so I'll try to just hit on the pertinent points. In all three of my pregnancies I developed pregnancy-induced hypertension (no liver or kidney involvement like in pre-eclampsia). Each time I was pregnant I kept thinking if I was in better shape, if I ate better, if I did this, if I didn't do that,  it would prevent it from happening. Prior to my third pregnancy I was probably in the best shape of my adult life, I was running 3, 6 mile runs a week, I have always been health conscious when it comes to eating. I am not over-weight, and when I am not pregnant I have normal blood pressure. About half-way through my pregnancy I started developing the same constellation of symptoms I'd experienced in my previous two. I didn't know what to do, so I decided to go back to eating Paleo which is the diet that made me feel best. So for the next 20 weeks I ate largely Paleo, significantly cut down on grains (because Paleo) but didn't specifically look to eliminate gluten. I was able to control my PIH to a degree after I did this. For the first time I was able to carry a baby to 40 weeks (first two my body decided 38 weeks was enough), and I was able to birth in a free-standing birth center rather than the hospital. After my daughter's birth (and 20 weeks of a strict diet) I went back to eating grains (and kind of a lot of them because I had felt deprived and also because I was trying to prepare for breastfeeding). 5 days after the birth I landed myself in the ER with BP of 160/104, had to go on BP medication for 3 months until I eventually stopped breastfeeding. The BP med didn't really do much to lower my BP but when I stopped nursing (another long, horrible story) and my hormones re-regulated it went down on it's own. I also had horrible post-partum depression and the worst anxiety of my life. I have had anxiety all my life, but nothing compared to the sustained panic I experienced after this birth. It was awful. So, fast-forward a year and I'm still looking for answers as to why this happened to me. I start thinking about all of the other weird things that have been going on with my body for as long as I can remember (burning, stinging scalp rash, unhealthy nails and skin, hair loss, IBS, anxiety, depression and I come across an article about undiagnosed celiac and PIH. There is a connection. (My mother also has all the same issues as me as well and a nerve disorder called RSD). So, in June of last year I decided to go gluten-free to see how it made me feel...and I felt so much better. My hair seems to be growing back, my scalp rash seems to be in remission, I stopped sweating profusely, the Beau's lines in my nails went away and you could see a distinct line in my nails from before and after going gluten-free, no IBS attacks, anxiety went down. I scheduled an appointment with an allergist for this Friday to test for wheat allergy/celiac and just to see what would happen I reintroduced wheat early last week. I was only eating it about 1-2x daily, and by day 3 I started to feel really odd. On day 4 I knew something was wrong. I felt just like I did after the birth of my daughter, so I went and checked my BP and it was 147/87 with a resting pulse rate of 102 bpm! My blood pressure had been consistently 115/68 prior to this. I immediately took wheat out of my diet again and 24 hours later my BP was back down 117/81 and my heart rate 92 bpm. Even after abandoning my gluten re-introduction I had heart palpatations for a couple of days.  Does anyone here have any insights into this or similar experience. I am young, 33, normal weight, and hopefully will know if I am celiac/allergic to wheat soon.

 

ETA: Oh I've also had a food related upper right chest pain when I eat for like 3 years. It is right under my right breast.  A very odd place. That went away when I went gluten-free too.

ETA: I don't know why my gender says male, I'm clearly not male :)

Edited by Kittydanger

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Just a reminder that they can't test you for Celiac because you have been gluten-free for so long.  The blood  tests look for the presence of antibodies.  You aren't making the antibodies if you aren't eating gluten for a prolonged period of time.  The endoscopic biopsy looks for Celiac damage to the small intestine.  Hopefully, being gluten free stops the damage and allows the intestines to heal.  You could do the genetic test.  However, that does not diagnosis Celiac - it just eliminates Celiac as the problem.  About 30% of people have a gene for Celiac but only about 1% actually develop Celiac.

 

It sounds like it might be dangerous for you to go back on gluten for 3 months, so you may not get a Celiac diagnosis at this time.  Perhaps in a few years, we will have better Celiac testing that would only require a few days of gluten or another way to test for Celiac without gluten.


 

 

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5 minutes ago, kareng said:

Just a reminder that they can't test you for Celiac because you have been gluten-free for so long.  The blood  tests look for the presence of antibodies.  You aren't making the antibodies if you aren't eating gluten for a prolonged period of time.  The endoscopic biopsy looks for Celiac damage to the small intestine.  Hopefully, being gluten free stops the damage and allows the intestines to heal.  You could do the genetic test.  However, that does not diagnosis Celiac - it just eliminates Celiac as the problem.  About 30% of people have a gene for Celiac but only about 1% actually develop Celiac.

 

It sounds like it might be dangerous for you to go back on gluten for 3 months, so you may not get a Celiac diagnosis at this time.  Perhaps in a few years, we will have better Celiac testing that would only require a few days of gluten or another way to test for Celiac without gluten.

Yeah, I think on Friday I am just doing the skin prick test? I assumed that they would order a blood antibody test, so that was my thinking with the re-introduction. I think I might actually be experiencing anaphalaxis, so I agree. I don't know that I will ever be able to do the celiac testing.

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11 minutes ago, Kittydanger said:

Yes, I know. Maybe I'm on the wrong forum.

Sorry.  That isn't my point.  I just wanted to make sure that, if the doctor says " your antibodies are negative.  No Celiac", that you understand you may actually have Celiac.  Unfortunately, I have seen a lot of docs that have no  knowledge of Celiac.  


 

 

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1 minute ago, kareng said:

Sorry.  That isn't my point.  I just wanted to make sure that, if the doctor says " your antibodies are negative.  No Celiac", that you understand you may actually have Celiac.  Unfortunately, I have seen a lot of docs that have no  knowledge of Celiac.

Ahh ok. Thanks :) I can't imagine that even if everything comes back negative that I will ever risk eating wheat again. I was afraid I was going to have a stroke!

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Even if you can never be tested for celiac, it would be a good thing to know if you have an actual allergy for two reasons. One, so you can get an epi pen in case you get exposed by accident. And two, so it can go into your medical record. If it's written in your record and you end up going to the hospital for any reason, they'll be really careful that they don't feed you wheat for lunch.

And by the way, celiac runs in families so it is recommended that all first degree relatives be tested every two years. If you do indeed have it, chances are one of your kids might too.


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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13 minutes ago, bartfull said:

Even if you can never be tested for celiac, it would be a good thing to know if you have an actual allergy for two reasons. One, so you can get an epi pen in case you get exposed by accident. And two, so it can go into your medical record. If it's written in your record and you end up going to the hospital for any reason, they'll be really careful that they don't feed you wheat for lunch.

And by the way, celiac runs in families so it is recommended that all first degree relatives be tested every two years. If you do indeed have it, chances are one of your kids might too.

Thank you. I am worried about my children and also my mother. I think if I test positive for a wheat allergy (even if I never make it to being diagnosed with celiac) she will likely take the steps to change her diet and/or get tested herself. I have one child with high-functioning autism and one who has some sort of undiagnosed intestinal issue. I took him to a GI doctor and they basically were like, "It's probably reflux, here's an acid blocker". I gave it to him for a month and then stopped. It's not reflux, IMO (he's 5). He can not drink more than a few ounces of juice a day or he will vomit in his sleep, so we just don't give him juice and that prevents it from happening. I tried to have the whole family go gluten-free but my husband has been so resistant and even up until my recent blood-pressure spike made fun of me for thinking wheat could cause any of my problems. He didn't even believe me about my scalp rash until it flared up one time and I showed him (and I just realized two days ago that the shampoo I was using at the time has wheat in it. It says wheat right in the ingredients.)

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So i got my results from Quest, though my Dr. has yet to call me about them, so we'll see what he says, but my Tissue Transglutaminase AB, IGA result was a 1, greater than 4 being postive. So, I dunno wtf to do with this information because I have been gluten-free for like 5 months, went back on it for 4 days a week before the test (then went back off because BP craziness), and then crammed some bread immediately prior to my blood test because despite the fact that my Dr told me I didn't have to be eating gluten for the test I had a feeling he was wrong. So, basically I'm back to square 1, unless everyone who doesn't have gluten sensitivity or celiac disease is also walking around with a low level of the gluten antibody in their system? I mean, my interpretation would be, hey it's present, which probably indicates something, unless it doesn't. Literally no idea. I may have exhaused my desire to find answers at the this point.

ETA: Oh and my Immunoglobulina A was 84 (81-463) being normal. I'm pretty sure this measures a deficiency, so a lower number would be less ideal, but also, not a Dr.

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7 hours ago, Kittydanger said:

So i got my results from Quest, though my Dr. has yet to call me about them, so we'll see what he says, but my Tissue Transglutaminase AB, IGA result was a 1, greater than 4 being postive. So, I dunno wtf to do with this information because I have been gluten-free for like 5 months, went back on it for 4 days a week before the test (then went back off because BP craziness), and then crammed some bread immediately prior to my blood test because despite the fact that my Dr told me I didn't have to be eating gluten for the test I had a feeling he was wrong. So, basically I'm back to square 1, unless everyone who doesn't have gluten sensitivity or celiac disease is also walking around with a low level of the gluten antibody in their system? I mean, my interpretation would be, hey it's present, which probably indicates something, unless it doesn't. Literally no idea. I may have exhaused my desire to find answers at the this point.

ETA: Oh and my Immunoglobulina A was 84 (81-463) being normal. I'm pretty sure this measures a deficiency, so a lower number would be less ideal, but also, not a Dr.

The IGA deficiency test is just a control test to see if the IgA tests (TTG, DGP) are valid.  Otherwise your doctor would have to run the IgG versions.  

It is hard to say, but since you had been gluten free for so long I think the tests are invalid despite your attempt at a gluten challenge.  You might just have to go gluten free without a formal diagnosis.  It can be done.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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