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When Do I Start Feeling Better Again?

katiekay

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katiekay Explorer
katiekay
Posted

I feel frustrated. I have eaten gluten stuff my whole life. I've always had trouble with my gut. When I cut out gluten from my diet a couple weeks ago I felt great. My daughter immediately had a relief from some of her symptoms. The doctor asked us to go back on gluten because we didn't have test results but this was after blood test. VERY ANGRY with my doctor... we went back on gluten and felt horrible. We get test results and they are of course negative because we'd been off gluten (actually he has my results and has still not called me yet... I think I may have mild case or something like that.). ANYWAY I am ticked because he immediately said for my daughter to go gluten free for 14 days to see if it made a difference to her weight gain. Well, why did he tell me to have us start eating gluten again if he was just going to tell us to get off gluten as soon as test results came in?

Now we have been back off gluten since yesterday afternoon and I feel like crap. My stomach is still in knots. My daughter is having trouble still. My husband thinks that going off gluten wasn't the cure all afterall. In fact he was irritated with me about it saying that we should just put her back on it. The frustrating part is that he called me about 25 mins. later on his way to work to say that he was noticing that normally his gut would be all upset but it actually feels better and that he thinks we should keep eating gluten free. I feel soooo frustrated. Why aren't I or my daughter feeling better yet? I know stuff comes back with a vengence... does that mean it also takes longer to go away???

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keithceliac2010 Rookie
keithceliac2010
Posted

Yes, getting glutened after being gluten-free for a while is no fun. I have only bee gluten-free for 5 weeks or so. After 3 weeks of going gluten-free, i got accidentally glutened and it knocked me down flat on my back for 48-72 hours. Had to just sleep it off. To me it was a good reminder that gluten really is like poison to my system, and that incident has made me become more vigilant about avoiding gluten in all forms-I try to stay positive and chalk it up to a learning experience. But while I was in the throes of getting glutened it was hard to think clearly. I understand how you feel now-it WILL work itself out of your system and you should get back to feeling good, like you were when you first went gluten free.

As far as your doctor whom you are frustrated with, I can totally understand your frustration. I was misdiagnosed for 30+ years, and it was my wife, NOT A DOCTOR, who diagnosed me. Without the internet, and my wifes vigilance in finding out what was wrong with me, I would still be sick. I have moments where I can look back, and I get downright pissed-off(for lack of a better word) at all the doctors who knew my symptoms(IBS, Bloating, Diarr and Constip, Agonizing stomach pain, Frequent daily heartburn, Chronic Fatigue, Depression, etc, etc etc.) Yet no doctor ever put it all together and they never mentioned celiac disease. I never heard about celiac until 6 weeks ago when my wife said she thought she found my cure-and it was right.

So, I had 2 options. I could, 1. Stay mad about the dozens of doctors who misdiagnosed me, which would get my blood pressure up and generally stress me out. Or I could 2. Let it go, enjoy my the NEW ME and my newfound energy and health, and just start taking responsibility for my own well being(and not relying on the doctors to give me a pill to fix all my ailments.) I have felt like crap for 2 decades and now that I have found relief and found my cure, I refuse to live in the past and the pain. I choose to move forward in my cure and as soon as your recent glutening gets out of your system you will feel better and have a brighter outlook. I promise.

Good Luck

katiekay Explorer
katiekay
Posted
  • Author

You are right about that. It doesn't solve anything!!!

OK - so here is my concern... we don't have a diagnosis and will never get one unless we go back on gluten for probably 3 months... the first time we went gluten free symptoms went away sooooo fast (one symptom for my daughter went away the same day she went gluten free). I am shocked and confused that is not happening again. So I just want to confirm that this is possible to happen i.e. the first time gluten free you get faster results than later times gluten free. I mean could it have just been a coincidence before that certain things happened or maybe I just saw in my daughter what I wanted to see because I wanted a cure-all? I was so positive it was gluten since it was so instantaneous. And since this time around it's not happening... nothing has been fixed... I am so confused.

And the other part is that I am having to push soooo hard with my husband about my daughter and maybe I just overreacted. (I do know my tummy hates gluten but that's all I know for sure) And if it's nothing than I'm tired of fighting my husband on this. He called me this afternoon to say his insides are feeling better already (he's been gluten free since this morning and got those instant results that I'm not getting this time around)... he says this now but after knowing him for 5 years I know that this weekend he could say he never said that and be upset with me again.

mushroom Proficient
mushroom
Posted

Katie, I think the first thing you have to do is be clear in your mind where you want to go. You sound so conflicted right now.

1. You know that gluten is bad for both you and your daughter.

2. You and your daughter both felt improvement when you went gluten free (no, I am sure it was not a figment of your imagination.

3. Neither of you has a diagnosis.

4. In order to get a diagnosis you must poison yourselves for 2-3 months.

5. When you started eating gluten again your response was worse and lasted longer (this is quite usual, by the way)

5. Your husband is resistant to the idea of eating gluten free.

So once your sort your way through these conflicting facts, you must decide whether a diagnosis is necessary for your family (and that includes your husband since he is not onboard with this idea). You know that without a diagnosis, if you go gluten free you will both improve and probably fully recover. Perhaps if your husband sees this he will get onboard. You also know that you will both be very sick if you gluten yourselves for three months. And the bummer of it is, at the end of those three months your testing could possibly still be negative; you may both be non-celiac gluten intolerant. I have forgotten, so please remind me if you had the genetic testing done and if either of you carries a celiac gene. Sometimes a doctor will diagnose based upon the gene, the symptoms, and recovery on the gluten free diet.

I am sorry to not be of much help, but I thought I would just set out the facts in bullet form to help you work your way through to a decision.

Good luck and cyber {{{{hugs}}}}

katiekay Explorer
katiekay
Posted
  • Author

Thank you for your response. I know that my frequent posts must be irritating. I just feel like I am against the world.

We haven't had the genetic test done yet but I just sent that request to a nutritionist I will be meeting with. My doctor has me going to see her instead.

katiekay Explorer
katiekay
Posted
  • Author

Would you mind taking a look at my results??? I think they are absolute worthless negatives but wondering what the last one is...

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    • knitty kitty
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      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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    • Wheatwacked
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    • Scott Adams
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      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
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