Feeling Overwhelmed

[Jackland79]

I apologize in advance for possible tmi. I assume considering the topic your all use to it but here it goes.

After a year of increasingly intense symptoms I reached my breaking point after 12 hours of diarrhea of blood and mucus and vomiting. I got into my doctors office and they ran blood test.

Two test were done Celiac screening  Tissue Transglutaminase Ab IgA  Reference was <12. My level was 127.0

The second was Deamidated Gliadin peptide Ab IgG Reference was also <12. My level was 147.5 Both said 95% specificity for celiac disease and my doctors office told me to start a gluten-free diet asap while I wait to see a speacilist and have a biopsy 

so my first question is, is it safe to say I definitely have celiac disease without running the biopsy yet? Originally I honestly cried because after reading all the symptoms I could check off everything and after years (I am 43) of doctor visits and test always coming back normal, I finally had an answer. But every time I read about it I feel so overwhelmed i wanna cry because I just wanna form a clear plan and work towards healing but honestly sometimes it feels hopeless. Can Anyone help with aside from picking gluten-free food how to educate myself? It is a 3 month wait to even see the speacilist. Can I book an appointment with a Nutritionalist or do I need referral? 

Any sites or books anyone found helpful starting out? 

sorry for the novel and thank you in advance 

[trents]

Welcome to the forum, Jackland79!

First, there is no doubt in my mind that you have celiac disease with the numbers for those two antibody tests. Please realize that if you go gluten free for three months until the endoscopy/biopsy there may be considerable healing of the small bowel villi and there is a strong risk of invalidating the test results. If for some reason you need the biopsy to trigger an official diagnosis of celiac disease, say for government subsidy of gluten free food (as is the case in the UK) or because you need the psychological confirmation to stay on track with the gluten-free diet, then you need to "gut it out", pardon the pun, and continue to eat regular amounts of gluten. If neither of those apply and you feel you cannot risk your health any further by continuing to consume gluten then start the gluten-free diet now. Here is a primer that will help you realize the places and ways gluten is hidden. Eating truly gluten-free instead of just eating lower gluten is challenging. Most people have no idea how ubiquitous wheat is in the food industry. Would you ever imagine that wheat is used in soy sauce and canned tomato soup, for instance? Would you consider that the gluten free meal you chose from the restaurant menu likely got cross contaminated back in the kitchen because the kitchen staff cooked those gluten-free noodles in the same water as wheat noodles or cooked that meat paddy on the same grill they just made a cheese sandwich on or that those french fries were cooked in the same oil as breaded chicken or fish strips. Who thinks about these things? This may help you to get off on the right foot:

Whether or not you can book an appointment with a nutritionist without a referral I cannot say. It may be different in your healthcare system than it is in mine. And honestly, the quality of advice you might get from a nutritionist is unpredictable when it comes to gluten disorders. If the nutritionist themself has a gluten disorder or is cooking for a family member who does then it is more likely you will get good advice. IMO, you would do just as good by seeking help from this forum community and it's free.

You would also need to get some good gluten-free vitamin and mineral supplements onboard as long term undiagnosed celiac disease will inevitably result in vitamin and mineral deficiencies. The villi that line the small bowel are responsible for all of our nutritional absorption and the very nature of the disease is that it damages this organ so that nutritional absorption becomes compromised, regardless of how well you are eating.

[Jackland79]

Thank you Trents.

I do think on some level having a biopsy run will help to mentally strengthen my control as it already seems like alot. I try to look up ingredients and sometimes hit a wall when on line in some places they are saying it's safe and then other places on line they are saying it's not. I will use this ingredients list just wondering does anyone know is that all the unsafe ingredients or the main ones?

I have started reading that article thank you. It has brought me to supplements amino acid and collagen as helping heal gut health are these the ones you where referring to or is there others?

I did ask my doctors office about holding off on the diet until after the biopsy after reading the info they sent me but she said because of my results and symptoms she would  suggest starting the diet immediately. I will talk to them about it when I meet them and make sure they know how long I've been gluten free.

Thanks again!

[trents]

No! If you intend to get a biopsy, do not start the gluten-free diet immediately. She gave you a bum steer. Most doctors are woefully behind the knowledge curve when it comes to gluten disorders. Think about it. What if substantial healing occurs in the small bowel lining between now and the biopsy because you start the diet now such that you are put in the dilemma of having positive antibody results but negative biopsy results? You will be in a quandary. If you don't believe me about needing to stay on a  gluten free diet until all testing is complete, please research this on the forum and on the internet.

As far as vitamin and mineral supplements go, we typically recommend an adult multi, a high-potency B-vitamin, about 5000U of D3 daily, either magnesium glucinate or magnesium citrate (not the magnesium oxide which is poorly absorbed). Make sure they are all gluten free.

Edited January 8, 2023 by trents

[Jackland79]

Okay thank you, I definitely don't wish to make it any more complicated.

[Wheatwacked]

On 1/8/2023 at 12:56 AM, trents said:

high-potency B-vitamin, about 5000U of D3 daily

looks like a typo instead of 5,000 iu of D3.

[trents]

Thanks for catching that typo, WW.

[knitty kitty]

@Jackland79,

Welcome to the forum!  Sorry you're feeling so poorly.  Yes, a Celiac diagnosis can be disorienting.  

One book I found very helpful is The Paleo Approach by Dr. Sarah Ballantyne, a Celiac herself.  She developed the Autoimmune Protocol Diet which has been scientifically shown to promote healing in the gastrointestinal tract.  Here's her website....

https://www.thepaleomom.com/about/about-sarah/

Following the Autoimmune Protocol Diet has helped me get the inflammation down and develop a method of eating that my body actually liked.  

Here's an overview of the AIP diet...

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

Yes, it's strict, but being on the diet is temporary, and as healing takes place, the body will be able to tolerate more foods.  

I could not tolerate the bone broth and fermented foods recommended because they are high histamine foods.  Histamine is produced by the body as part of the autoimmune reaction.  Histamine is also found in certain foods.  Our bodies can have so much histamine, that our cups runneth over, resulting in horrible symptoms.  I chose low histamine foods that are allowed on the AIP diet and had significant improvement within a very short time.

"Let food be they medicine" Hippocrates

It can be a big mental adjustment, but it's a good path to try.  

Be sure to check with your doctor about starting the gluten free or AIP diet.  

Have your doctors made a diagnosis of Celiac Disease based on blood tests and symptoms?  Are they just performing the endoscopy as a baseline for recovery?  Or are your doctors doing the endoscopy for Celiac Disease biopsy and diagnosis confirmation?  

@trents is correct that intestinal healing will take place during the three (?!!!?) months you will have to wait for an endoscopy.  While microscopic damage will still be apparent in affected areas, gross visual damage may not be apparent.  You do need to get that clarified.  

Best wishes and do keep us posted on your progress! 

[Jackland79]

Thank you knitty kitty!! Those links are super helpful.

My doctors office honestly didn't say much. They said my test came back positive for celiac disease and that I would need to start a non Gluten diet immediately. She explained about cross contamination and how risky eating out can be. She said she would refer me to a speacilist and he would probably do a biopsy. I read all the info and questioned if I shouldn't be waiting for the biopsy to start eating non gluten as it what the info she sent me said and she said "No you had two test done and both came back very high, I strongly recommend you start it immediately.

So I did that was mid November. Once I heared from my speacilist I asked the receptionist the same question she said not to go against my doctors orders and talk to the speacilist about it when I come in but my appointment is not until mid February. I did eat a high in gluten meal once since and two days later paid for it.

I really don't wanna mess any further testing up though. 

[trents]

4 minutes ago, Jackland79 said:

Thank you knitty kitty!! Those links are super helpful.

My doctors office honestly didn't say much. They said my test came back positive for celiac disease and that I would need to start a non Gluten diet immediately. She explained about cross contamination and how risky eating out can be. She said she would refer me to a speacilist and he would probably do a biopsy. I read all the info and questioned if I shouldn't be waiting for the biopsy to start eating non gluten as it what the info she sent me said and she said "No you had two test done and both came back very high, I strongly recommend you start it immediately.

So I did that was mid November. Once I heared from my speacilist I asked the receptionist the same question she said not to go against my doctors orders and talk to the speacilist about it when I come in but my appointment is not until mid February. I did eat a high in gluten meal once since and two days later paid for it.

I really don't wanna mess any further testing up though. 

The Mayo Clinic guidelines for the pretest gluten challenge is the daily consumption of 2 slices of wheat bread (or the gluten equivalent) for two weeks leading up to the endoscopsy/biopsy. So, maybe you could tolerate that much gluten for that long and not have to torture yourself the whole time while you are waiting.

[Jackland79]

1 hour ago, trents said:

The Mayo Clinic guidelines for the pretest gluten challenge is the daily consumption of 2 slices of wheat bread (or the gluten equivalent) for two weeks leading up to the endoscopsy/biopsy. So, maybe you could tolerate that much gluten for that long and not have to torture yourself the whole time while you are waiting.

Yes thank you Trent that is super helpful to know. I will do that:)

[knitty kitty]

@Jackland79,

I don't want to contradict your doctor's orders.  I think clarification from the specialist doing the endoscopy is needed.  If your doctor has let the specialist know it was recommended that you immediately start the gluten free diet, the specialist should take into account the amount of healing done in the gluten free time period.  

Your high blood antigen test results do not mean that you have lots of intestinal damage.

It's sad and frustrating that doctors and specialists are not  more consistent with their information.  They don't understand because they don't experience it themselves. The Hippocratic Oath says "First do no harm" which seems counter intuitive to doing a gluten challenge.  At least you'll have a baseline endoscopy with which to measure healing when compared to future endoscopies.

Misdiagnosed for years, laughed at for suggesting Celiac in the first place, I had gone gluten free out of necessity prior to diagnosis.  My health deteriorated drastically to the point I couldn't tolerate any food, much less a gluten challenge.  (TMI apologies: I had a two hour transit time.  Anything I ate was out in two hours.)  I began the AIP diet.

One of my doctors acquiesced and tested for genetic markers of Celiac Disease.  I have two genes for Celiac Disease.  He made the diagnosis based on my DNA and the health changes on and off gluten.  

So I understand completely where you're coming from.   

Do what's best for you.  

{{{Hugs}}}