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Diagnosed In Childhood- Now Adult

KatieKat

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KatieKat Newbie
KatieKat
Posted

Hi- I'm new here :) Well, I have a few questions because I don't have the insurance to get tested right now. So, here's the story..

As a baby, I was diagnosed with some type of wheat (well, gluten) intolerance and milk intolerance. I thought I grew out of the wheat thing, but the milk is still an issue- in large quantities and I prefer soy anyway. BUT I read that you don't grow out of this (gluten intolerance).. Is this true?

Also, through the years, I have been diagnosed with irrital bowl syndrome, a spastic colon, fibromyalgia, unexplained fatigue (with tons of thyroid tests), and I have severe migraines. So, I am guessing I don't even need a straight diagnosis. I am hoping my migraines will go away.

I am looking to see what other's opinions are on this... Does this pretty much mean I am allergic? Grr.. I don't want to be, but I'll do anything to stop all these health issues..

Thanks,

Katie

:rolleyes:

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KaitiUSA Enthusiast
KaitiUSA
Posted

Well you can get tested for celiac to see if you have it...but you can't grow out of it if you have it.

If you want to get blood tests you need to stay on gluten...since you know you have a problem with it you could always eliminate gluten and see how you feel. However it is an all or nothing diet with absolutely no cheating if you want to get better.

Also, celiac is not an allergy..it is an intolerance

KatieKat Newbie
KatieKat
Posted
  • Author
Well you can get tested for celiac to see if you have it...but you can't grow out of it if you have it.

If you want to get blood tests you need to stay on gluten...since you know you have a problem with it you could always eliminate gluten and see how you feel. However it is an all or nothing diet with absolutely no cheating if you want to get better.

Also, celiac is not an allergy..it is an intolerance

<{POST_SNAPBACK}>

Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

Claire Collaborator
Claire
Posted
Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

<{POST_SNAPBACK}>

Go gluten-free by all means. When you have insurance or the funds to be tested you could go with the Enterolab test (insurance iffy?) or with Kimbal labs. Most insurances will pay for Kimball. This is a genetic test - done by cheek swab. It will determine if you have the specific gene markers associated with celiac. Having them doesn't mean that you have celiac but if you also have the symptoms then it is an evidence based assumption that you do. If you do not have the markers you could not have celiac. Unfortunately Kimbal does not test for non-celiac gluten sensitivity that is usually the answer when a celiac test (in the presence of symptoms) is negative. Enterolab does both tests. Claire

FaithInScienceToo Contributor
FaithInScienceToo
Posted

Hi Kaite, and welcome!

Just one comment from me, right now -

I have been learning that soy, and corn, have also been linked to villi damage...so, prepare yourself for the possibility that you may need to get those out of your diet, too...

If you haven't already, you may want to check out this thread that I started with my questions about dairy/casein for more info:

Open Original Shared Link

Good luck, and I hope you'll find here all of the info you'll need to find your way back to good health!

Gina

nettiebeads Apprentice
nettiebeads
Posted
Thanks :) I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

<{POST_SNAPBACK}>

Well, the gluten-free diet would be cheaper than dr's testing, and it is a valid diagnostic tool - the gluten or diet challenge. That's how I was dx'd 9 years ago. But you do have to be 100% gluten-free - no wheat, oats (they're cross-contaminated in the US. The official verdict on oat itself is still out), rye or barley. No malt from barley, or spelt, or triticale. Some things are labled wheat free but still off limits to celiacs. And as for being depressed about the diet - I just wanted to feel better so I didn't care what I had to cut out. I still had issues with it at the beginning, but since I've been really 100% gluten-free, I don't miss the stuff - I enjoy my health too much. And depression has been linked to celiac disease, so going without gluten-free relieves the depression.

Good luck and keep us posted, ask any questions you want.

  • 9 months later...
lindalee Enthusiast
lindalee
Posted
Hi Kaite, and welcome!

Just one comment from me, right now -

I have been learning that soy, and corn, have also been linked to villi damage...so, prepare yourself for the possibility that you may need to get those out of your diet, too...

If you haven't already, you may want to check out this thread that I started with my questions about dairy/casein for more info:

Open Original Shared Link

Good luck, and I hope you'll find here all of the info you'll need to find your way back to good health!

Gina

Thanks for posting this

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    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
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      Headaches / Migraines and Hypoglycaemia

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      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
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      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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