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Gluten Free Trial For Celiac Diagnosis?

Spunky007

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Spunky007 Apprentice
Spunky007
Posted

Hi all-

I'm new here, and I posted this topic on a runners website discussion board, but I thought a site like this might provide me with more information!

Here's the short version of my story/symptoms:

I've struggled with "stomach issues" for years now, and I've also had trouble gaining weight despite being underweight. I struggle to eat 3000+ calories, but it's so hard to "just eat" when I'm always uncomfortable and feel like I have to go to the bathroom constantly [both ways].

These are my strongest symptoms:

-constipation and the opposite [always going, but have trouble going]

-rectal bleeding

-delayed puberty

-no weight loss, but underweight

-lack of period

-muscle cramps

-abdominal distention, discomfort

-flatulence [all the time, no matter if I eat gassy foods or not]

-Dry Skin

-Constant feeling as though I need to use the restroom, and never feeling

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Phyllis28 Apprentice
Phyllis28
Posted

If you plan to have a biopsy you need to continue to eat gluten. A biopsy can still be negative at this point because celiac can be patchy or you could be gluten intolerent only. One advantage to a biopsy is the doctor can look for other diseases at the same time.

A gluten free trial is a valid way to determine if gluten is making you sick. A biopsy after being gluten free will be negative. I never had a biopsy. I got better on a gluten free diet. That was proof enough for me.

I would suggest a gluten/dairy free diet to begin with. Eat only naturally gluten free foods. If the results are good add back dairy and processed foods slowly.

itchygirl Newbie
itchygirl
Posted

I did the unnatural totally processed route- :lol: I drank gallons of Ensure Plus when I was first going gluten free. Its got no gluten and no lactose. And I did not have to think about what to eat, which is hard enough for me on a good day....Ensure and bananas...

Has your doctor sent you to an endo or a metabolic disease expert yet?

Spunky007 Apprentice
Spunky007
Posted
  • Author

Yikes...should I be avoiding dairy too? I thought milk WAS naturally gluten free! :o

I already feel like I can barely eat anything [probably because Im a cereal, snack, carb addict] and I have yogurt and cottage cheese nonstop! oh no...

It doesn't help that I eat a lot and like convenience!

It will all be worth it if this turns out to be the problem though, so I want to make sure and do it right!

I won't be getting a biopsy any time in the near future. I don't have insurance right now, so all medical service is cut off. My Dr. WAS talking about sending me to an endo/metabolic specialist...so perhaps in the future. But for now I can't wait, this is a ridiculous way to live and getting worse.

Spunky007 Apprentice
Spunky007
Posted
  • Author

One other Question-what is the difference between gluten intolerance and celiac?

Phyllis28 Apprentice
Phyllis28
Posted

Dairy is naturally gluten free. It is your choice to eliminate dairy or not and in what quantities.

It is my understanding, from other posts, that the tips of the villi is where dairy is digested. If your villi have been flattened by celiac then dairy could cause problems until healing takes place. I eat dairy without any problems.

Someone else will have to comment on the difference between celiac and gluten intolerance.

kbtoyssni Contributor
kbtoyssni
Posted
-Do you think it is possible that I am suffering from Celiacs, despite negative bloodwork?

-Is a gluten free trial a good next step for me?

If so:

-Starting yesterday I am aiming to go 3 weeks gluten free, until the end of march, is this sufficient time to notice a change?

-any tips I should know about for going gluten free that might mess up the detox/healing/results?

You certainly could be celiac. Bloodwork isn't exactly know for it's accuracy. There are many false negatives. It takes a long time for the antibodies that build up in the intestines to leak out into the blood so positive blood work means you're really sick. It's certainly worth trying the gluten-free diet (but do remember going gluten-free pretty much guarantees future negative blood test and biopsies).

Three weeks may be sufficient. If you have other intolerances you may not notice a change, though. I gradually got better over the course of a few weeks and didn't notice until I ate wheat again. That was when I knew I had an issue.

Watch for contamination: toasters, condiments that have been double-dipped into, wooden spoons, pet food, lotions. And eat natural foods like meat and veggies and rice - they're easy to prepare and don't have as many ingredients to check!

Yikes...should I be avoiding dairy too? I thought milk WAS naturally gluten free! ohmy.gif

I already feel like I can barely eat anything [probably because Im a cereal, snack, carb addict] and I have yogurt and cottage cheese nonstop! oh no...

It doesn't help that I eat a lot and like convenience!

Milk is naturally gluten-free, but the tips of your villi is where lactase is produced. If your villi are damaged you won't be able to digest lactose well until you heal. So many choose to eliminate dairy at first. And remember that gluten is an addictive substance to celiacs. You may be a carbaholic now, but in time your addiction will decrease, and you won't have those cravings.

One other Question-what is the difference between gluten intolerance and celiac?

I feel that gluten intolerance is a spectrum with celiac being at the very end when you have a lot of damage. The treatment is the same - a strict gluten-free diet so I never bother too much with the difference. There are some who will say that there's the gluten intolerance to celiac spectrum and a separate just gluten intolerance spectrum that makes you feel sick when you eat gluten but isn't autoimmune and won't cause the same kind of long-term damage. Not a lot of research in this area so who knows.

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The Lovebug Rookie
The Lovebug
Posted

Hi Spunky,

Your symptoms certainly sound like they could be celiac. The Mayo Clinic website says that positive response to a gluten-free diet should in-and-of-itself be diagnostic for Celiac. I went gluten free after reading about Celiac online, and my symptoms subsided within about 24 to 48 hours. So I would think that a 3 week trial is plenty of time. If it IS celiac, and you go gluten-free, you'll probably know almost immediately.

Some doctors insist on doing tests while others (many of the experts in the field) don't. The gluten-free diet is probably the most specific, non-invasive and inexpensive test you can do.

You mention lack of a period, which can be Celiac related but can also be a result of running, can't it? It seems to me I've heard that avid runners often stop menstruating.

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    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
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