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faiths13

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faiths13 Newbie
faiths13
Posted

Hi

My name is Beth. Im new to the forum. I am pretty sure I have a gluten sensitivity. I am debating on whether or not to go to the Dr. I know that if it is just a sensitvity then they cannot detect it. I know that if it is Celiac then there is no cure and you have to just go gluten free. Im not really sure what to do.

 

I just know that for a lot of years I have had really bad brain fog. I didn't know thats what it was called. I would just wake up and feel awful and never really feel awake and in this world. I would some days just feel really tired and dragging all day. I would crave carbs and sugar like crazy. Some days I would just be dizzy all day. I have always had stomach problems. Constipation, gas, bloating. I just thought after so many years it just was and there wasn't anything I could do about it.

 

Anyway I have been on this diet where they dont do much wheat. So for a couple of months I had less gluten than normal (well so I thought. That stuff hides everywhere!) But on Christmas I just went off the diet and went super crazy eating junk all day, and part of the next. Then I started to feel really awful. Anyway, I just never felt all the way better so I kept searching for answers. It turned out that my stomach problem and all the other problems(that I never would have linked together) were symptoms of gluten intolerance. So I tried to go off gluten for a few days to see if I felt better. I know if I want to go to the Dr I have to keep eating it. But I was pretty convinced it was not gluten anyway.

 

Until tonight. I got a cheeseburger from McDonalds, with the bun, but didnt eat the bun, just the burger with my own condiments too. And then I felt awful. Dizzy, head hurt, weird drugged like feeling. Ugh. So I searched around and apparently McDonalds is not a safe place to eat gluten free. But I guess that is a pretty good indicator I have a gluten problem.

So just coming to this forum to introduce myself. Thanks.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi Beth and Welcome to the Forum!

 

Whether or not to get tested is a personal decision and one only you can make.  That said, if you have not already been gluten-free for a significant amount of time (which you haven't) and you can tolerate eating gluten for a short while longer, in my opinion it is worth getting tested.  For one, if your bloodtest shows positive for Celiac then they will do an endoscopy and make sure that that's all that's going on - including a screening for certain types of cancer which are more prevalent in Celiacs.  For two, if you have Celiac then you know it's genetic and other members of your family should get tested too - especially if you have or plan to have kids.  Some people also find that over time they need that official diagnosis to stick with being completely gluten-free.  I also think there is a benefit to having an official diagnosis because if you ever end up in the hospital you have a medically-accepted reason to request gluten-free meds and gluten-free food.  If the doctor sees you as just another person who decided to try going gluten-free because it was the "cool" thing to do at the time they may ignore your requests for gluten-free.... assuming you're able to make that request in the first place.  Having a diagnosis does not guarantee they won't still poison you (many doctors are clueless) but it increases your chances - in my opinion.

faiths13 Newbie
faiths13
Posted
  • Author

Hi :)

Thank you for your response. After last night I woke up feeling like I have a hangover. Its unreal that gluten could do this to me. You made some very valid points. I have 4 sons. I am concerned about my oldest who could have it. Or any of them. But with the way I feel now I don't want any gluten! Lol. How long do you think I will have to eat it and how much a day?

NoGlutenCooties Contributor
NoGlutenCooties
Posted

For someone who has already gone gluten-free, they recommend eating the equivalent of 2 pieces of bread every day for at least 2 months.  But it doesn't sound like you've been gluten-free, right?  Why not get tested now and see how the tests come out?  (Meaning the blood test.)  You could also get your kids tested - or at least your oldest.  If he has it then you know that either you or his father must have it, because it is genetic.

faiths13 Newbie
faiths13
Posted
  • Author

No I havent gone 100% gluten free yet. But I feel really awful today after eating that McDonalds hamburger. I had been off gluten 4 days yesterday. But I would have to keep eating it every day while I wait to get tested right? Im not even sure what to say for an appt. Do I just ask to be tested for celiac? Im afraid they will think Im nuts, lol. I don't have a great track record with Dr's...

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Yes, you need to continue to consume gluten until testing is completed.  In my opinion, if you explain your symptoms to your doctor and request the full Celiac panel of blood tests and they refuse (or don't know what that is) then it is time to find a new doctor.

 

This site explains the usual panel of tests:  Open Original Shared Link

 

If consuming gluten causes too much pain and suffering, you could request the tests for your son (assuming he is not gluten-free already).  Many people on here have not gotten an official diagnosis because it would simply be too painful to continue to eat gluten.  If you go 100% gluten-free and your symptoms disappear - and then come back when you eat gluten - you'll pretty much have your unofficial diagnosis and know that you either have Celiac or non-Celiac gluten intolerance.  If your son has Celiac, then you can be confident in knowing that you have it too.

faiths13 Newbie
faiths13
Posted
  • Author

Thank you. This is all so new to me. It was only a few days ago I even thought I might have a problem with gluten. I had no idea that gluten could even make people so sick!

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nvsmom Community Regular
nvsmom
Posted

I would get all of your kids tested. Many kids don't have obvious symptoms but are hurting themselves everytime they eat a PB&J sandwich. 

 

Plus, it sounds like you will be going gluten-free regardless of your results (for non-celiac gluten intolerance [NCGI] or celiac disease) so your kids will be eating less wheat too and that will affect your results.

 

Like Cooties said, make sure you are consuming gluten prior to testing. You might want to delay testing for a few weeks so the test is more reliable as going gluten light can mess up some people's results with false negatives.

 

Be aware that some celiacs have negative blood tests due to IgA deficiency or for other unknown reasons. It's a minority but it does happen. That's a good reason to go gluten-free after testing regardless of the results. If you feel better a few months (like six) after going going gluten-free, then it is some sort of gluten intolerance. Just make sure you give the diet a long trial. Issues can keep cropping up after going gluten-free. When I went gluten-free, I had an attack of fatigue, arthralgia, and hair loss that lasted a couple of months which was a lingering and reappearing gluten symptom for me. Plus, some people experience gluten withdrawal within a few days going gluten-free, and it can last for a couple of weeks. Withdrawal symptoms include stomach pain, headaches, fatigue and moodiness - that could even be what you are experiencing now...

 

Best wishes and welcome to the board.  :)

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