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Need Help With How I Am Feeling...

blondebombshell

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blondebombshell Collaborator
blondebombshell
Posted

went to the GI doc yesterday and he has me scheduled for an endoscopy for 3 weeks from now. he told me to get back on gluten to see if when they do the endo if they will be able to tell what my stomach/intestine look like.

as a result of adding this back into my diet i have ITCHY hives everywhere on my calves. could this be DH?

i have never had these itchy bumps. just constipation which caused me to go off gluten, thinking that after having a blood test indicating that i was gluten intolerant that maybe that was it. now that i am putting it back into my diet after being off of gluten for 1 month, i cant handle this!

do you think its celiac? do you think it could be something else?

thanks so much

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ravenwoodglass Mentor
ravenwoodglass
Posted
went to the GI doc yesterday and he has me scheduled for an endoscopy for 3 weeks from now. he told me to get back on gluten to see if when they do the endo if they will be able to tell what my stomach/intestine look like.

as a result of adding this back into my diet i have ITCHY hives everywhere on my calves. could this be DH?

i have never had these itchy bumps. just constipation which caused me to go off gluten, thinking that after having a blood test indicating that i was gluten intolerant that maybe that was it. now that i am putting it back into my diet after being off of gluten for 1 month, i cant handle this!

do you think its celiac? do you think it could be something else?

thanks so much

You are showing a positive reaction to the challenge. That is diagnostic for more intelligent doctors. Your body liked being gluten-free and now it is showing you how much it liked it. Many of us have C for years as the body tries desperately to draw nutrients into our system through an intestine that is not functioning normally. Eventually your intestines will be damaged enough for episodic D and then a life sitting on the toilet. Whether you continue with the challenge is up to you. I still feel it is barbaric for doctors to demand that we make ourselves extremely ill just to 'prove' we have a problem with something that has progressed far enough to cause permanent (at times) damage. If they can use a gluten suppository and biopsy of cheek or rectum in other countries I don't know why they can't do that here, oh wait, yes I do. An endo requires an invasive procedure in a facility with lots of cash going into their pockets, a noninvasive biopsy can be done in office with a local and only regular staff with no OR.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted

I had an itchy rash/hives thing on my upper leg and my ankles when I was at my sickest. It certainly does sound like celiac disease to me. I can't imagine having to go back to eating gluten again. Thankfully I had all of my tests done before going gluten free and feeling better. Good luck!

blondebombshell Collaborator
blondebombshell
Posted
  • Author

wow - i told him that i had itchy hives after eating some bread once and he didn't say anything. he said that since this is 'sudden,' like i have never had issues with the hives or not that it could be allergies.

my whole life i had issues with going to the bathroom. i only go about once a week if i am lucky. that is why i went to the doctor in the first place (the regular doc) and he did some blood work. this indicated that i had a gluten and egg white allergy. that was it. he said, well try a gluten free diet, lol.

i took it a step further and made an appt with a GI doc and now i have these bumps from time to time and i am assuming that they have to do with the gluten.

he told me that a gluten free diet is hard to stick with and it is expensive. whatever i guess, right!

Jestgar Rising Star
Jestgar
Posted

The diet ends up being a lot cheaper than all the prescription meds you have to take to control all the symptoms.

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    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

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    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
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      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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