Overwhelmed

[Xsmama]

I have always felt like something is different with my immune and digestive system.  History of 2 colonoscopies at age 41, diagnosed with IBS.  Always seem to get sick easily, history of depression, anxiety, infertility, miscarriages, anemia, etc.  I had an appointment last week with my rheumatologist who ran a bunch of blood work with my Ttg at 104.  He told me this indicates that I likely have celiac disease and can explain a lot of my symptoms and poor immunity.  Now I have to wait for an appointment with a GI doc in 3 weeks for a consult to discuss possible EGD with biopsy.  I feel like I am in limbo, have no idea where to start or get answers, or how to process all this since I don't have an "official diagnosis" and can't make any changes in my diet to see how it can improve my health.  I am angry, sad, anxious about them saying the biopsies would be negative and that I really don't have celiac, and just overall overwhelmed.  I am new to this and would appreciate any feedback as I am just looking for some support.  Thanks for listening. 

[trents]

Welcome to the forum, Xsmama!

Who was it that told you the biopsies would be negative? Even after you got those tTG numbers? They look like a "positive" to me. Do you have a reference range (what is postitive vs. negative) for that test? There aren't industry standard ranges for those antibody tests. Every lab uses it's own values. Please post the reference range for that tTG if you don't mind.

[Xsmama]

Hi Trents, 

Thank you for the welcome:) I have made the mistake of reading a lot online about people having high Ttg and getting negative biopsies and that they don't have celiac, so I am just worried about that.  The reference range is as follows:

0-19 negative

20-30 borderline

30 and above moderate to strong positive.

I had a 104. Also my liver enzymes (AST/ALT) are elevated...which I don't know if that is related.  

 

[trents]

Elevated liver enzymes are one of the known symptoms of celiac disease. In fact, this is what led to my own celiac diagnosis as there was no other reason for them being elevated. My GP tested me for all known viral hepatitis diseases and they were all negative. He didn't have a clue. Finally, after years of elevated liver enzymes and some other lab values starting to get out of whack,  I scheduled an appointment with a GI doc who tested me right away for celiac disease. Enzymes were positive and so was the biopsy.

Although we do get an occasional report on the forum of positive antibody tests and negative biopsies, this is not a common occurrence and it usually happens when the tTG-IGA is not strongly positive. Yours is strongly positive.

[Wheatwacked]

On 1/7/2023 at 2:40 PM, Xsmama said:

I am angry, sad, anxious

Until you have the diagnosis you must continue eating it.  A negative biopsy does not rule celiac disease out but a positive biopsy is the Gold Standard for a positive diagnosis.  Ultimately when you start GFD you will get angry that you did not start 41 years ago.

You can start fixing your vitamin status. Celiac Disease is one of malabsorption and the longer it goes ignored the more malnutritioned you become, leading to multiple symptorms.

Low vitamin D is a given comorbidity with autoimmune disease which celiac disease is. Taking 10,000 IU a day will improve your mood in a few days. Lower doses will take longer, espeicially this time of year in the Northern Hemisphere. As your blood plasma of D reaches 80 ng/ml it regains control of your autoimmune system, but it took me 6 years of 10,000 a day to get to 47; another two years to go from 47 to 80. It's a simple blood test.

Liver enzymes are deficient Choline. No test for choline. Eat lots of eggs and beef or take supplements. The safe upper limit for choline is 3500 mg a day. Hard to get too much. Non alcoholic fatty liver disease has been definately linked to low choline. Either by malabsorption or diet. A double check on that could be homocysteine blood level which is not normally checked. A high level (around >20) could indicate low absorption of Choline, B12, folate and or B6

Thiamine deficiencies is common in Celiac Disease and Alcoholics for the same reason: malabsorption. It has a host of neurological and physiological issues connected to subclinical deficiencies. Best test used by the World Health Organization is to supplement and watch for improvement.

Vitamin D and Depression: Where is all the Sunshine?

Vitamin D and the Immune System

The Addition of Choline to Parenteral Nutrition

Hiding in Plain Sight: Modern Thiamine Deficiency

On 1/7/2023 at 2:40 PM, Xsmama said:

I likely have celiac disease and can explain a lot of my symptoms and poor immunity.

Yes it would. The autoimmune effect would explain some and the malnutrition due to Celiac most of the rest.

Edited January 9, 2023 by Wheatwacked

[knitty kitty]

@Xsmama,

I understand how frustrating the diagnosis process is.  

Your doctors are correct in telling you to continue the gluten containing diet until the endoscopy.  Healing in the small intestine can take place rapidly once gluten is removed.  While some damage is visible without a microscope, the doctors need to take samples of the small intestine to examine microscopically to see how extensive the damage is.  If you quit eating gluten now, they might not see enough damage to make a confirmation of Celiac Disease.  

The Hippocratic oath says "first do no harm".  That seems counter intuitive to continue eating gluten.  

My doctors laughed at my request for Celiac biopsy.  This was years ago when doctors were not as aware of the prevalence of Celiac as they are now.   Years later, suffering deteriorating health, I was not able to complete a gluten challenge required for "classic" diagnosis.  One doctor did agree to do a genetic test.  Turns out I have two genes for Celiac.  Considering my health improvements off gluten, the doctor made a diagnosis of Celiac Disease.  

You're a few weeks away from getting a diagnosis using the classic "Gold Standard" intestinal biopsy.  Your doctors seem aware you are probably Celiac.  Ask if you can be put on a "Cancellation List" so you can be seen sooner.  Do let your doctors know that you are eager to complete the diagnostic process.  Do let them know if your symptoms are worsening.

Use the remaining weeks of gluten consumption to have all your favorites one last time before saying farewell.  

Since only two slices of gluten containing bread are seen as necessary to continue the inflammation, perhaps cutting down to this amount of gluten could help you stay the course.  

Do get testing for any vitamin and mineral deficiencies that commonly occur with Celiac. 

Look into the Autoimmune Protocol Diet, which promotes intestinal healing.  Talk to a nutritionist about selecting nutrient dense foods.  

Sending you lots of support! {{{HUGS}}}

[RMJ]

Even if you were to have a negative biopsy, you don’t need a doctor’s permission to try a gluten free diet! (after all testing is complete, of course).