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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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    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
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