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Is Celiac My Magic Bullet?

AerinA

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AerinA Rookie
AerinA
Posted

Hi everyone.

Sorry in advance for a long post...

Basically, I'm one of those people with a really, really, really complicated medical history. I was born with a kidney deformity, got that taken care of. I've had problems with ADHD my whole life, had migraines since 4th grade, I don't remember ever NOT feeling sleepy (not quite narcoleptic but close), most recently had thyroid cancer. Every time they come up wtih some new diagnosis for me I think "hey, maybe THIS will fix my brain fog!" or, "maybe I'll start to be less sleepy now!" My immune system has always been terrible too, and I have a bad habit of nearly bleeding out on the surgical table. I'm so tired of feeling like a dysfunctional human being, like my body is falling apart--I probably couldn't list all my symptoms if I tried, since I don't know what's causing what, I don't even think I could make a comprehensive list.

Most recently, I changed endocrinologists due to my synthroid not absorbing at all, and my previous doc not really paying attention (my TSH was 27 even taking my meds every day ?!?!) She immediately found that I had undetectable levels of D2 as well, though I had small amounts of D3. She says she strongly suspects celiacs, but doesn't want to put me through a biopsy. I haven't yet gotten to scrutinize the results of the blood work they did, whatever it was.

Based on my lifelong symptoms, I'd say that a lot of things would be explained by celiacs, but I'm overweight (used to be under but... with the thyroid issues it's hard to know the real cause of that), tend to have IBS problems but NOT the classic multiple bathroom trips (tends to be the opposite), and I have had so many other conditions (and surgeries, and treatments, and everything else) that I have no idea if I'm barking up the wrong tree. A biopsy doesn't sound like the end of the world, but what if it's negative? I've been at a loss for a really long time, it would be SO nice if going gluten-free fixed stuff, but I hardly dare to hope for it. Anybody have input or experience similar things? Any advice at all would be much appreciated.

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mushroom Proficient
mushroom
Posted

I think you need to get a copy of your blood test results to find out what tests they did and what the results were. If they did not run the celiac panel they should do so. If they did you need to know what the results were, especially iif she strongly suspects celiac disease.. One doesn't normally have a biopsy just for low vitamin D.

ravenwoodglass Mentor
ravenwoodglass
Posted

Do get a copy of the test results. If they are positive it sounds like your doctor will consider you diagnosed. Since there is a chance of a false negative with the biopsy anyway some doctors are diagnosing without one. After you are done with all the testing you choose to do give the diet a good strict try no matter what the results of testing.

T.H. Community Regular
T.H.
Posted

...and if the tests and biopsy are both negative? There is absolutely nothing stopping you from trying the diet yourself, either. A number of people here have tested negative for celiac disease, both blood and biopsy, but had symptom improvement (or complete reversal) on a gluten free diet.

Re: the symptoms? I don't have the big D, either. I never thought I had gut issues, but now I notice I get the opposite when I get gluten, too.

eatmeat4good Enthusiast
eatmeat4good
Posted

I've been overweight too and that is also a symptom of Celiac, not just the weight loss. It has to do with swelling and inflammation. Your thyroid medication not being absorbed is another indicator. I just read the book by Peter Green, Celiac A Hidden Epidemic. In this book he discusses exactly what happened to you in the case of your Thyroid med not being absorbed and he describes two cases where women were diagnosed with Celiac because their astute doctors recognized the medication was not being absorbed.

Ask for a full Celiac Panel and if you want the biopsy ask for it. After everything else you have been through, it seems ridiculous that your Dr. "doesn't want to put you through that" particularly if it will give you a diagnosis. However, like they said above, if your Dr. is willing to diagnose you without the biopsy based on your bloodwork, then you will be able to get on with eliminating gluten from your life and start feeling better.

What you are describing as brain fog began to lift for me withing the first two weeks of being gluten free.

You just may have your answer now.

Do dare to hope.

AerinA Rookie
AerinA
Posted
  • Author

Thanks for the input, everyone.

I've been on the diet for a month now, I still haven't seen my doctor again post-blood work so I haven't gotten to analyze it, but I'm feeling much more awake and "with it" now, so I'm staying on the diet regardless of what it says. It can only get better from here.

eatmeat4good Enthusiast
eatmeat4good
Posted

That is wonderful!

Thanks for posting, I was wondering how you were doing.

I hope everything continues to get better.

It is really amazing how incredibly ill one can be from gluten.

At 4 months into this diet, I continue to get better everyday.

Take care.

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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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      Son's legs shaking

      By lizzie42 · Posted

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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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