Frustrated

[Jmartes71]

Im not being heard by my previous doctor I had for 25 years. I switched in May of this year.I was half told of my celiac disease in 1994 and to stay away from wheat and Ill be just fine.Im not.Was on tramadel from I think 2006 til 2023.In 2007 still gluten-free had blood test and showed other food allergies. I have been avoiding and reading labels so I don't get sick.Im 54 years old, my right eye feels as if pressure ( seeing eye specialist) saw dermatologist and had skin graph was told ulcers but since I was disregarded of my celiac disease and it was previous doctor who sent me to dermatologist, its now " undetermined ".I pushed for the first and second ANA panel and negative. I had my 5th colonoscopy July 9 this year and colon looks great, BECAUSE IM gluten-free for 31 YEARS.Waiting on biopsy.My only celiac proof on medical was 2014 that i physically have, i don't have original. How do I get my new doctor to understand the severity of pain Im dealing with, daily flare ups.Exhausted and allergic to everything. Menopause has intensified, i feel but then again I had my 3rd covid in March 2023 and I can't bounce back.Pain down left leg always in the bathroom when I barely eat.Its affecting my life and frustrated with doctors not knowing.To be far my new doctor is having me see two specialist but how do I get him to understand its my false negative celiac disease????

[Scott Adams]

 It sounds like you’ve been doing everything right—strictly avoiding gluten, managing food allergies, and advocating for yourself—yet you’re still dealing with severe pain, exhaustion, and other debilitating symptoms. The fact that your colonoscopy came back clear after 31 years gluten-free is a testament to your diligence, but it doesn’t erase the very real struggles you’re facing daily. It’s concerning that previous doctors dismissed your celiac diagnosis, and now you’re left fighting for validation while dealing with unexplained symptoms like eye pressure, skin issues, and relentless pain. Menopause and long COVID may be complicating things further, making it even harder to pinpoint the root cause.

Are you sure your diet is 100% gluten-free? Do you eat in restaurants...if so, this can be a source of contamination. Trace amounts of gluten over time could explain your symptoms.

Many people with celiac disease have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[knitty kitty]

Welcome to the forum, @Jmartes71,

Wow!  31 years!  That's great!

You can get a DNA test to show genes specifically for Celiac.  Your genes don't change whether you eat gluten or not.  

Have you been checked for nutritional deficiencies?  The gluten free diet can be low in essential nutrients.  You may have become a bit deficient after such a long time.  Deficiencies in certain vitamins and minerals can lead to many health problems.

Start keeping a food journal.  Other food sensitivities could have developed.  Journaling can help connect symptoms with specific foods.  Vitamin D can help calm the immune system so you don't react to everything.

When I was deficient, I had peripheral neuropathy, headaches, migraines, joint aches.  I was seriously deficient in many other vitamins and minerals.  Our bodies need the eight essential B vitamins to function properly.  Thiamine deficiency can appear first because thiamine can become depleted within eighteen days.

Infections can deplete thiamine stores. Covid Longhaulers are frequently thiamine deficient.  Ask for an Erythrocyte Transketolace Activity test if available.  Blood tests aren't really accurate measures of Thiamine, but if low, you've probably been deficient for a good while.

Thiamine and Vitamin D may help with menopause.  I also take Oil of Evening Primrose which helps immensely.  

I was deficient in Cobalamine B12, thiamine and the other B vitamins.  B Complex vitamins are important for nerve health.  I had pain up my legs from neuropathy.   A combination of Thiamine, Pyridoxine B 6, and Cobalamine B12 acts as an  analgesic.  

Thiamine deficiency can take the form of Gastrointestinal Beriberi, causing almost constant diarrhea.  I bought a chamber pot and kept it handy.  I couldn't make it to the bathroom.

Thiamine deficiency can affect appetite.  One can lose their appetite or become ravenous or swing between the two extremes.  Thiamine deficiency can also cause weight loss and muscle wasting.  I lost weight then muscle within days.  

Yes, I understand.  I lived through it despite my doctors not recognizing thiamine deficiency outside of alcoholism because it presents differently.  I was so desperate,  I took over the counter Thiamine in the form Thiamine Tetrahydrofurfuryl Disulfide (TTFD) and felt improvement within an hour!  It was like magic!  I also took the other essential vitamins and minerals.  Talk to a dietician.

Talk to your doctor about testing for thiamine deficiency.  Definitely.  

Keep us posted on your progress!  Best wishes!

Edited July 24 by knitty kitty
Typo correction

[Jmartes71]

Thankyou I will be seeing my new primary this coming Monday and will ask.I did ask about some other blood test to look for that I saw on this website.I pushed the second ANA panel two months ago thinking it would show but found out it doesn't.I don't have lupus which seems what the ANA panel seems to only look for.I have come to the conclusion that doctors are like hair people meaning all hair places know how to cut hair and style but not all know how to grow hair.I was given tramadel for nearly 20 years to push through. I literally can't no more and stopped taking tramadel since I was swelling slowly in the belly.I will diffently show new primary this website and hopefully he will help.Its so hard because im falling apart with my eye, skin and read every label and stay away from what Im not supposed to.I had SIBO test done and it died on me and didn't complete all 8 breathes just the 5.I spoke to np and was finally validated by word of mouth.Cone to find out I have to repeat again.I went to a reputable hospital to be let down.I have to redo breath test but want to do at hospital instead of at home so no issues.Its not pleasant drinking that glucose stuff and not getting a direct answer. I live in Northern Cali.What recommended gi would know about celiac  disease, really know because I thought I found one but didn't. I don't want to digest any wheat, dairy, peanuts, rye, barely, eggs,garlic, walnuts because I get sick.When i showed the reputable hospital my past food allergies i was told that test is old.My thoughts were i was made in 1971 and its still avtive with diagestive issues. 

[knitty kitty]

I followed the Autoimmune Protocol Diet to get my symptoms calmed down and my nutrients up.  

I know what a struggle it is.  You're why I'm here. Smoothing out some rough parts of your journey makes my journey worthwhile.

Here's the tests you can get for Celiac antibodies...