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Next Steps?

waterfront

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waterfront Newbie
waterfront
Posted

Hi all,

Very new here...am learning lots the more i read. many thanks to you all.

I went to a new general practicioner because i didn't like my old one. I just went in for a physical to start a new relationship. Since I'm not a big doctor-goer, so this was a long time coming...it was on my "to-do" list for literally years before i got around to it.

So I brought a little "list" of my "issues" to discuss with my new Doctor. Which included:

* back and shoulder pain (from old injuries)

* this stupid rash that i get on my scalp that is really bad. had it for years off and on. its awful when i have it. big clusters of welts that i just can't touch or they will get worse...

* i've started to skip periods and i wanted to know if i'm premenopausal early

and during the appointment i mentioned

* i'm lactose intolerant

* i have all kinds of other foods i can't eat: bread, pasta, nuts, soy, cereals, pretty much anything that says "whole grain" on it and more. This has been going on for years.

(all of these foods give me gas to the point of pain sometimes)

She automatically said (amongst other things) we'll test you for Celiac. Which really sort of set me aback. So I've been reading up...it's been a little eyeopening.

I'm sure much of what i've said above makes everyone nod their head and go "yup, sounds familiar...". So, like i mentioned, the GI stuff i've had for years. I've been mostly dairy free for 5 years or more. I try hard to not eat bread, pasta, nuts...it just hasn't been worth it to me for a long time. A month or so ago I even specifically bought indian and thai cookbooks so i could further change my diet toward veggies and meat and away from bread and pasta based meals. I wasn't thinking gluten free, i was just trying to make very tailored dietary changes for the better for myself (and my family). It's been great diet wise. I eat really well, and my GI problems lessened a lot...and when i was at the doctor my scalp was actually clear, which is rare for me.

So i'm going to get the results of the blood test soon. Chances are good it'll be negative, based on my dietary changes over the years. (FYI, no family history of Celiac, but i've long suspected my Mom has some untreated GI issues).

Here are my questions:

If the test is positive do I...ask to see a GI? get further tests to confirm? do I need to see out a Celiac specialist so I get the right tests performed and what might those be? or do I just go gluten free and live my life (which at the end of the day is what i'll do anyway)?

If the test is negative do I...ask for a referral to a GI anyway and get further testing? ask my GP for a genetic test? go back when i have my rash for a biopsy?

Where in the diagnosis process does a challenge fit in? Is it something that happens as a last resort after blood tests all say no? Where would a endoscopy fit in for someone like me, who has been effectively gluten lite for years?

There must be some order of operations for diagnosis, but i haven't seen one anywhere...could you all please share your wisdom here, it will help me a lot to make good choices for myself going forward.

Best, Waterfront

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eatmeat4good Enthusiast
eatmeat4good
Posted

There is no order of operations for diagnosis...as you will find as you keep reading.

Welcome!

Some people struggle hard and long to get diagnosed. Others just drop gluten when they find it bothers them. I tried to get help for my rash, which turns out to be DH. But 3 dermatologists refused to biopsy or consider it anything significant except acne, neurotic excoriation, or hives. The one who said hives was the closest to being right but it was a long way from a DH diagnosis or Celiac.

You can do any of the things you posed in your questions. The important thing is what is important to you.

Possible outcomes are: You biopsy the rash and it's negative for DH but it responds to being gluten free so you stay gluten free. Or you biopsy the rash and it's positive for DH and you go gluten free.

The endoscopy with biopsy can give you an idea of how much damage is done and if you are Celiac. But people with DH often do not test positive in biopsy of intestine or skin. (Dr. Peter Greene- Celiac, A Hidden Epidemic) However, they must avoid gluten and be aware that iodine can keep the antibodies active in the skin. sometimes strict limiting of iodine is necessary. See thyca.com if you find this applies to you.

A challenge is up to you also. If you go off of gluten and want to be tested you would have to eat gluten for like 3 months at a rate of 4 slices of bread a day and many people have tried but find they do not have the "stomach" for that. Then they stay gluten free and always wonder and it bothers them. If it will bother you not to have the official stamp of Celiac...then you would consider the challenge followed by testing. If you just want to know about your food reactions, you can go strictly gluten free and then eat gluten to see what your reactions will be. But reactions can change. Many people find they get more and more sensitive to gluten the longer they are off of it. So a gluten challenge can very quickly convince them they will never eat it again.

I considered testing for about 24 hours and then decided I was so miserably sick that I wanted to ditch gluten to see if I could get better. I did. Fast too. The "challenge" came whenever I made a newbie mistake and contaminated myself accidentally and got really really sick. I found that traces make me really sick. So I knew I was Celiac. Then I checked vitamin levels. Sure enough D was low. Then tested for Hashimoto's...sure enough...I have it. Rash healed after one year of gluten free. So now the Dr. believes it was DH and based on everything that got better in the last year....I am considered a Celiac by my Dr. and myself. But I only really found my answers here...and Dr. confirmed after.

I'm thrilled for you that you have a Dr. that started out of the gate with...we will test you for Celiac. Give her a hug from this Celiac who saw 25 Dr.s and was diagnosed hypochondriac by most. :) Sounds to me like you have your answer and you will be gluten free in the end. Good idea to have thyroid and vitamin levels checked. Then enjoy your path to healing. Because it really is like watching yourself age backwards. All sorts of things can and do get better. Sounds like the main thing you will have to learn is how to be careful with cross contamination but you will get better as time goes on.

Hopefully someone will have a better answer. I just wanted to say hi and welcome and share one crazy long path to diagnosis. But the result has been nothing short of a miracle. Hope yours is too!

waterfront Newbie
waterfront
Posted
  • Author

Thank you for your response.

I think the main issue for me and diagnosis is a practical one. At 42, missed periods can be a lot of things, including possible complications from Celiac. It's probably worth it for me to pursue a diagnosis to get as much insurance coverage if i were to try and conceive (i'm not now) and have difficulty.

It would also be easier for me to have a diagnosis so I can skip a lot of family drama.

So we'll see what happens...

Funny, i mentioned this testing to my Mom, and she told me one of my first cousins had to go gluten free for some reason...it just feels like there are too many coincidences here for this to not be linked to gluten somehow.

Thanks again!

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