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What To Do Now?


angelschick

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angelschick Apprentice

Long story short I went gluten-free about 4 weeks ago with some improvements right away then symptoms returned a tad. I began to think the week of no pain was a fluke but toughed it out and had my cholesterol tested after being gluten-free for 3 weeks and 3 days. Heres the results -

WAS IS

Total cholesterol 83 110

Triglycerides 49 200

The other numbers increased slightly also. First time I had my cholesterol tested(6 years ago) the total was 96 and its never been higher, until I went gluten-free. So, my guess is easily celiac for sure since the only change was going gluten-free. After having a mourning period last night now I must decide how to proceed. Once I had the cholesterol test done, I went off gluten-free, honestly hoping/thinking it wasn't celiac. Three days into eating wheat my symptoms are back full force, my GI ones plus some!! So I get I have to do this - I read how it progresses and scared myself enough to bite the bullet again. But hubby and I have some concerns.

Doc tested EMA which was negative. Should I get the biopsy done? My questions are many....

Do I need the biopsy to see healing later on?

If the Doc won't DX me on symptoms and blood work alone, will this haunt me down the road with other care providers, hospital stays, etc..?

Does the biopsy show other damage besides loss of villi?

Do I need to followed to track possible side effects from having celiac and being mis-diagnosed for so long now?

How can celiac make me malabsorb fat yet my vitamins and such are all ok - Vit D, calcium, iron etc so common with celiac are all fine.

Thanks

Amy


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dilettantesteph Collaborator

At this point the GI's agree that the only way to diagnose celiac is with a positive biopsy. No one can prevent you from not eating gluten though. It might be helpful to know a definite diagnosis. That way when you have problems with the diet you can be a bit more sure of yourself. There also might be other causes for your condition that you could miss without a proper diagnosis. I don't think that cholesterol tests mean much with regards to celiac. You need to get a celiac panel.

Lisa Mentor

I do not think that there is a connection between high cholesterol and celiac diseasse. There may be a connection with a distressed liver.

Gluten free processed food a often high in fat and can effect your cholesterol levels.

What is your history of testing regarding Celiac If you have not already done so, a Celiac Panel with a return to the gltuen free diet, might render a diagnosis. An endoscopy/biopsy exam can indicate Celiac, but it can also look for other concerns.

If you are in pain or symptomatic, I would encourage your to pursue testing.

angelschick Apprentice

Maybe I am misunderstanding things or I wasn't clear in my post. One of the main reasons I even suspected celiac disease was because of my freakishly LOW cholesterol. No Doc could explain it and I don't lead the lifestyle to support such low numbers. In the few weeks I was gluten-free, that was the only thing that changed in my lifestyle and it brought my cholesterol up which I am assuming means I was not absorbing cholesterol while eating wheat.

Amy

ShayFL Enthusiast

I see where you are coming from Amy. Mine used to be low too. If something prevents you from processing and digesting fats then it will be low. Gluten can do this, but so can other things.

The fact that you improved symptom wise on a gluten-free diet is MORE telling.

You can start noshing on tons of gluten for the next 3 months and get a FULL celiac panel run plus biopsy for a gold standard Dx. Or you can eat gluten-free and never look back. Some use Enterolab to test for gluten intolerance (doesnt Dx Celiac). You can get the genetic test too either through your Doctor or Enterolab. That would just be another piece to the puzzle (still no Dx).

You have options. Do what feels right for you.

Mother of Jibril Enthusiast
WAS IS

Total cholesterol 83 110

Triglycerides 49 200

Congratulations on the increase! :) I know your cholesterol levels were extremely low (too low)... it's amazing how fast your labs can change when you change your diet.

I agree that this one result does not rule celiac in or out. For that you need other tests. BUT... you did have a positive response to the diet. Why not stick with it? Do you really need a diagnosis? In my personal experience... whether you have a diagnosis or not, YOU are the one that needs to stay on top of any new symptoms and get them checked out. A good doctor might suggest some other tests (like a bone scan), but I've never had a good doctor <_<

Some people are diagnosed with a biopsy alone. If that appeals to you, try to have it done as soon as possible because a gluten-free diet starts the healing process.

Lisa Mentor

https://www.celiac.com/gluten-free/lofivers....php/t8494.html

Here is another thread regarding low cholesterol. It's a bit dated (2005), but the information may be somewhat current.


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Nancym Enthusiast

High triglycerides are often connected with blood sugar being high. If you're eating a lot of starchy or sweet things, especially with HFCS in it, that could account for your triglycerides being high. Maybe your intestines weren't processing your food right before and that kept your triglycerides lowish.

The very best treatment for high triglycerides is to stop eating the refined carbohydrates like bready and sugary things. Cut out the breads, crackers, non-diet soda pop, juices and eat whole foods like meats, veggies, fish, whole fruits. Your triglycerides will come down about 25% every few months. And all that "whole grain" hype is utter nonsense, your body will easily metabolize even whole grains into triglycerides.

Anyway, I find this cardiologist has a wonderful grasp on cholesterol (for the most part): Open Original Shared Link Read some of his old postings.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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