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JessieFree

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JessieFree Apprentice
JessieFree
Posted

I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?

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Lisa Mentor
Lisa
Posted
I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?

A gluten reaction can be delayed, and some here can react up to three days later. That might be something to think about. There are also some celiacs that are non-symptomatic. They have no symptoms, but the damage does occure.

Celiac is not always about what you consume in your meals. Lipstick, lotions, shampoos, meds and scratched pots and pans, wooded spoons used prior to being gluten free can also cause problems.

I do not know how long you have been gluten free, but for many here, it has taken months to feel relief from a gluten free diet. There are way too many traps to fall into when you are first diagnosed.

It is really unrealistic for a very newly diagnoses celiac to go 100% - there is just way too much to learn. But it can be done with study and diligence.

Hope that can answer some of your questions. And welcome!!

Ed-G Newbie
Ed-G
Posted

For me, it depends. Sometimes I get a gluten reaction right away, and sometimes I don't seem to get any at all.

Ed in MD

Mickide Apprentice
Mickide
Posted

I have been walking through life with no idea I was Celiac or real symptoms from gluten. I just thought it was me, how my body was, never really thought anything was wrong (except losing 30lbs). It is actually my biggest fear about my recovery, that I won't know if I accidentally ingest gluten.

jacqui Apprentice
jacqui
Posted

After I was diagnosed my sis ter kept denying she had celiac b/c she did not have symptoms or so she thought. 10 mos. later she was + for celiac disease, anemia, osteopenia, vit. deficiences... Since gluten-free she is feeling much better and relized she did have symptoms after all but she just thought it was normal ie bloating to looking pregnant after eating-she just thought she ate too much...

She also became sick going gluten-free at first. Every "typical" symptom of celiac disease she had on a gluten-free diet!! :blink:

I had a positive biopsy and negative allergy/blood tests. I'm supposed to be trying the gluten-free diet for 3 months to see if it's true. I don't think it is because I know there were times when ate gluten and never had a reaction and there are times i have reactions when I know I've had no gluten. I've been on and off the diet (because my doctors have different opinions) and couldn't tell much of a difference either way. Why would I still have symptoms with gluten free foods?

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    • AlwaysLearning
      Gluten related ??

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      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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