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3 hours ago, knitty kitty said:

Interesting, funny thing, they are having me do a testing kit from ubiome clinical for testing my guts bacterial biome next week. I find things normally happen in odd groupings in my life this should be intriguing.

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40 minutes ago, Ennis_TX said:

Interesting, funny thing, they are having me do a testing kit from ubiome clinical for testing my guts bacterial biome next week. I find things normally happen in odd groupings in my life this should be intriguing.

Sounds like you were going to say they were going to use you like a science experiment to learn new and interesting things from. I do so hope though that you learn something interesting that could help you.

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5 hours ago, Ennis_TX said:

Interesting, funny thing, they are having me do a testing kit from ubiome clinical for testing my guts bacterial biome next week. I find things normally happen in odd groupings in my life this should be intriguing.

So glad the article might shed some light on things.  Would be interesting to compare your results with those findings in the article.  

Yes, the timing of things can seem more than coincidental... 

K

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This is probably the last update on this topic since it's really post testing. 

I saw my GP.  He doesn't test for ferritin, never giving iron for low ferritin because too much iron is not good. 

He stated quite firmly that I am NOT to consume gluten ever again, no matter what the tests showed. So good to hear that he's not sending me off for counseling and saying it's all in my head. 

I have still been a bit dizzy. He thinks it's one of two things (or both).  Vertigo and/or POTS, both triggered by the neurological affects of immune response to gluten.  He thinks in another two weeks things will be even better.  Luckily I just had my yearly physical before the challenge, so he knew I had none of these symptoms before the challenge.

I think POTS makes sense and I thought of it last week when I was puzzling over the lingering dizziness.   When I looked over my Fitbit data, my heart rate really jumped during the gluten challenge when the dizziness set in. Specifically when waking. It went from 55bpm to 130bpm and stayed high until I laid back down every morning.  There is a consistent 30-50bpm spike from low points throughout the challenge.  Now, the spike isn't so high and doesn't last as long, but there is still about a 30bpm spike when I'm dizzy.  When I squat down, heart rate drops, then spikes again when I stand.   It happens in the morning, when I eat and when I'm really tired. Happily, increasing salt intake and water, as well as moving more seem to help.  All the standard treatment for POTS. When I wake, if I just stand in one place I get dizzy, but moving around seems to help. 

Another improvement from the doctor visit was my blood pressure. My whole life I have been low (typically 90/54).  Today it was 108/69. 

He also gave me some things to do to help with vertigo and will recommend physical therapy if the spinning and eye focus strain persist. 

I still wonder about ferritin levels since taking the iron supplement last week seemed to make me feel better and I have seen that low ferritin and mild anemia are common with POTS, but I'll just keep eating a lot of red meat and assume things will get better with time.

I have also seen recent interesting articles saying POTS is more common with gluten intolerance than the general population and also some work pointing to a possible autoimmune cause.  

I'm wondering how many folks here have experienced POTS symptoms triggers by gluten?  My symptoms were clearly triggered by the gluten challenge but are now persisting, but manageable. 

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17 minutes ago, Feeneyja said:

This is probably the last update on this topic since it's really post testing. 

I saw my GP.  He doesn't test for ferritin, never giving iron for low ferritin because too much iron is not good. 

He stated quite firmly that I am NOT to consume gluten ever again, no matter what the tests showed. So good to hear that he's not sending me off for counseling and saying it's all in my head. 

I have still been a bit dizzy. He thinks it's one of two things (or both).  Vertigo and/or POTS, both triggered by the neurological affects of immune response to gluten.  He thinks in another two weeks things will be even better.  Luckily I just had my yearly physical before the challenge, so he knew I had none of these symptoms before the challenge.

I think POTS makes sense and I thought of it last week when I was puzzling over the lingering dizziness.   When I looked over my Fitbit data, my heart rate really jumped during the gluten challenge when the dizziness set in. Specifically when waking. It went from 55bpm to 130bpm and stayed high until I laid back down every morning.  There is a consistent 30-50bpm spike from low points throughout the challenge.  Now, the spike isn't so high and doesn't last as long, but there is still about a 30bpm spike when I'm dizzy.  When I squat down, heart rate drops, then spikes again when I stand.   It happens in the morning, when I eat and when I'm really tired. Happily, increasing salt intake and water, as well as moving more seem to help.  All the standard treatment for POTS. When I wake, if I just stand in one place I get dizzy, but moving around seems to help. 

Another improvement from the doctor visit was my blood pressure. My whole life I have been low (typically 90/54).  Today it was 108/69. 

He also gave me some things to do to help with vertigo and will recommend physical therapy if the spinning and eye focus strain persist. 

I still wonder about ferritin levels since taking the iron supplement last week seemed to make me feel better and I have seen that low ferritin and mild anemia are common with POTS, but I'll just keep eating a lot of red meat and assume things will get better with time.

I have also seen recent interesting articles saying POTS is more common with gluten intolerance than the general population and also some work pointing to a possible autoimmune cause.  

I'm wondering how many folks here have experienced POTS symptoms triggers by gluten?  My symptoms were clearly triggered by the gluten challenge but are now persisting, but manageable. 

Thoughts on the iron and sodium...Look at Pea Protein. I cook with it and eat chips made of it. The stuff is high in both and one of my primary protein sources as it is easy for me to digest and not sugary/carby so no issues with my digestive tract. Let me find the one I use https://www.luckyvitamin.com/p-345361-growing-naturals-raw-yellow-pea-protein-original-16-oz

30% of your daily iron in a scoop I consume about 2 scoops of this one a day along with some blends.  Being pure and unflavored I can mix it into my homemade breads, sauces, etc.....bit of a acquired texture but this is the purest I can find and a long story to why I use this brand (very emotional one)

There is a chip made of pea protein,,,really crunchy, not so good on flavor but the bloody truth is due to the low carb nature of it, it is the only chip I can eat a whole bag of and not get sick or feel bad (not that I do that I normally only have a handful) Protes are the name https://eatprotes.com/

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On 6/7/2017 at 4:55 PM, Feeneyja said:

Just saw the GI. He is going straight to endoscopy on Monday.  I will have been 4 weeks on my gluten challenge. He is confident that is long enough for endoscopy. He also said he prefers to NOT rely on the blood test first because too often you are not positive yet but the damage or inflammation shows on endoscopy. 

I have been feeling worse and worse.  Headache, dizzy, nauseous, burning feeling in throat and stomach, SO tired, gurgling stomach, gas, bloating, feels like there's a bowling ball in my stomach, mucus, constipation, my hair is falling out.  It just feels worse every day, by the weeks end I just need to rest and eat less gluten for a day.  Start to feel better, but then go right back to my gluten challenge the next day and am hit like a ton of bricks.  I sure hope I have eaten gluten long enough to show.  But would certainly be glad to be done with this self torture.

It really is a horrible thing: purposely inflict harm on oneself for a medical diagnosis. 

I'm just thinking, if you have sores in your mouth then wouldn't the antibody be present at that site, just as it would be with dermatitis herpetiformis, and could this area provide promise for a positive biopsy? 

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When you ask if you can be anemic and still have a normal CBC, I would say yes, but add that there are different causes of anemia. So if you are talking about iron-deficiency anemia, I would still say the answer is yes. There are different stages of iron deficiency anemia.

First stage iron deficiency – Characterized by decreased bone marrow iron stores. Hemoglobin and serum iron are normal. Serum ferritin decreases. Iron-binding capacity increases.
Second stage – there is a decrease in transport iron: serum iron decreases and transferrin increases. Measure both; the more transferrin and the less iron in the blood, the more advanced the deficiency. Iron saturation of transferrin decreases.
Third stage – occurs when lack of iron limits hemoglobin production. This is the late stage, a late indicator. H&H will drop. That is a quick and easy test. However, the criteria is not just low hemoglobin, but low hemoglobin and low iron. Tests include serum iron; total iron binding capacity; serum ferritin; and transferrin saturation.

I'm not sure if you are the same person considering an iron transfusion with a hemoglobin of 12 something (to which I recommended you hold off, because 12 is normal), but as others have noted, your hemoglobin is normal now, and like you said, best to wait to talk to your doc about supplementation. (Seven is a pretty darn low hemoglobin, BTW!)

Plumbago

 

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1 hour ago, artistsl said:

I'm just thinking, if you have sores in your mouth then wouldn't the antibody be present at that site, just as it would be with dermatitis herpetiformis, and could this area provide promise for a positive biopsy? 

If the sores were  dH, then ...yes.  But mouth sores are probably not DH.  

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No, I was not the one considering an iron infusion. My hemoglobin is 12.7. When I was still feeling tired and dizzy last week I decided to just take iron supplements and see. I did feel better each day. But iron can be dangerous (thank you cyclinglady for reminding me) and I just need to be patient. 

A lot was going on in my mouth during my gluten challenge, but I don't think any of it would show celiac on a biopsy (but wondering, is there any research on that?). It likely was just stress/inflammation. That definitely affects dental/mouth health. 

I'm tired of doing research and advocating for myself. I just want a doctor I can trust and time to feel better. My GP spent a lot of time with me and we had a good discussion. His point was that in his book, it doesn't matter if it's autoimmune or not. Clearly my immune system was reacting and compromising my health.  And it takes time for the immune system to down regulate when it has been in hyperreactive mode.  He also said he suspects they will find an autoimmune reaction in true NCGS (not Fodmap issues), but testing is just not there. 

I'm also happy that doing SOMETHING is producing a result. I really didn't think POTS could be possible for me because I didn't really notice a racing heart or anything. I was quite surprised when I reviewed my Fitbit data. There was one day in particular when I was feeling just awefully dizzy when I got up in the AM. I just wanted to be comfortable and tired of being sick and I remember consciously taking off my Fitbit and putting it aside because I just didn't want anything annoying on me. My heart rate was going from 60bpm up to 135 at that point. No wonder I felt bad.  

For people with POTS, you need to drink 2-2.5 liters of water a day. I hardly ever drink that much. So I started paying attention to water and it has really helped. Another tactic to help with the morning heart rate jump is to drink two large glasses of water before getting up. And wouldn't you know, no only has that helped with the heart rate fluctuations (I was jumping from 55 to about 110 recently and now it only goes to about 75 or 80) but it also has resolved the constipation!

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12 hours ago, Feeneyja said:

No, I was not the one considering an iron infusion. My hemoglobin is 12.7. When I was still feeling tired and dizzy last week I decided to just take iron supplements and see. I did feel better each day. But iron can be dangerous (thank you cyclinglady for reminding me) and I just need to be patient. 

A lot was going on in my mouth during my gluten challenge, but I don't think any of it would show celiac on a biopsy (but wondering, is there any research on that?). It likely was just stress/inflammation. That definitely affects dental/mouth health. 

I'm tired of doing research and advocating for myself. I just want a doctor I can trust and time to feel better. My GP spent a lot of time with me and we had a good discussion. His point was that in his book, it doesn't matter if it's autoimmune or not. Clearly my immune system was reacting and compromising my health.  And it takes time for the immune system to down regulate when it has been in hyperreactive mode.  He also said he suspects they will find an autoimmune reaction in true NCGS (not Fodmap issues), but testing is just not there. 

I'm also happy that doing SOMETHING is producing a result. I really didn't think POTS could be possible for me because I didn't really notice a racing heart or anything. I was quite surprised when I reviewed my Fitbit data. There was one day in particular when I was feeling just awefully dizzy when I got up in the AM. I just wanted to be comfortable and tired of being sick and I remember consciously taking off my Fitbit and putting it aside because I just didn't want anything annoying on me. My heart rate was going from 60bpm up to 135 at that point. No wonder I felt bad.  

For people with POTS, you need to drink 2-2.5 liters of water a day. I hardly ever drink that much. So I started paying attention to water and it has really helped. Another tactic to help with the morning heart rate jump is to drink two large glasses of water before getting up. And wouldn't you know, no only has that helped with the heart rate fluctuations (I was jumping from 55 to about 110 recently and now it only goes to about 75 or 80) but it also has resolved the constipation!

I've experienced POTS along with some strange issues with my peripheral vision when driving. Water definitely helps. I've heard iodine intake can cause DH to flair. I wonder if the high water intake flushes iodine. ? Again, just another deep thought from Stephanie. 

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