All biopsies negative and I've had enough! Need advice please x

[PoorlyPixie]

I had a rant here about 3 months ago after I received the results of my own biopsy, and was advised to go gluten free anyway, which I still haven't done but I'm experimenting with foods and hope to be gluten free soon. I wanted to come here and ask your advice again, because my dad had a biopsy about 4 weeks ago, the results of which came today, and I am so surprised to read they're negative. They told him it was very likely that he had celiac because his blood test was transglutaminase positive. He has low iron, low vitamin D, reflux, and his long-term symptoms of M.E/Chronic Fatigue Syndrome which I know are also common symptoms of celiac. Everyone was sure he might have it, so I don't understand why his biopsy was "normal with no evidence" of the disease. The letter does however suggest further blood tests to see if he might develop celiac disease in the future. If his immune system is attacking and it's showing in his blood, doesn't that mean he's already developed it? Why would it do that if he didn't have celiac going on now? I've been encouraging him to try gluten free bread and biscuits but he's been reluctant, now he definitely won't. Should he? Or should he wave the whole thing off and continue eating his sandwiches like he did quite happily today? I guess they will tell him at the appointment. It's just so ridiculous because after he eats wheat he gets reflux! I was also counting on his results being positive...

Sorry I'm rehashing my story now, but since 2011 I've had severe, chronic reflux that has gotten worse with time and has remained a mystery after a barium, manometry and two endoscopies; IBS; light headedness/heavy/cotton wool head with brain fog; headaches and jaw pain; muscle pain and severe weakness; sensitivity to noise, light, and heat, also the sun; fatigue and crashing after activity; bone pain; also severe acne that only responds to antibiotics; dry and flaky skin; brittle, cracked and peeling nails; year-round allergies, like having a mild cold permanently; and the occasional mouth ulcer and bleeding gums. The absolute worst is the reflux, followed by the IBS and then my head. I haven't been able to spin in a circle for years. I can't dance. Can't exercise. I feel so dizzy and sick all the time. Can't bend over or lie down with the reflux. Have cut out all acidic foods and FODMAPS. I am underweight. The reflux doesn't allow me to drink much water now because it feels like I have a little ocean of acid/bile sitting in my esophagus and drinking just adds more to it. So my throat has been so dry for months now. Barium and endoscopy both showed acid/bile sitting there, and a hernia. Manometry presumably showed no reason for reflux like a problem with the wave or a loose LES. But my blood work was negative and then my biopsy was negative. I cried on my friend's shoulder when I got that letter, and I've been counting on dad's results since. Now... Now what?

I haven't heard from the hospital in 3 months, since my results came back. I don't know if they're waiting to figure out my father before figuring out me, or if they've discarded me. They told me I'm difficult. So I'm looking for gluten free foods but it's difficult without medical support, and being the only one in the house that wants to be gluten free, cross contamination is going to be a constant threat. Just persuading them to have a second toaster is a battle in itself. (Gluten free pancakes are all very well, but not if I put them in that toaster!) Honestly, I'm at my wits' end. I haven't been healthy since 2011. I'm only 28. I don't remember what it feels like to not have reflux, acid, bile; to eat anything with no pain or gas or toilet trips; to spin in a circle or go to amusement parks; what it feels like to have a clear head. I avoid sunny days. This was all triggered and set off at the end of 2011 by panic attacks and a hospital stay. Oh, I forgot to mention that my stools are often pale, like beech furniture (that might be a strange comparison!). I've really just... had it. 

So I'm not really sure what I'm asking... should we both go gluten free despite negative biopsies? Or might we just have M.E/Chronic Fatigue Syndrome, which my dad was diagnosed with 18 years ago? Thank you for reading!! 

[frieze]

Quote

why is the second toaster even negotiable?  keep it in your room if necessary.

 

[TrainInVain]

Is seeing a different Primary Care or GI an option with your insurance?

[tessa25]

It's worth it to try 100% strict gluten free for a few months and see if it helps. Dr Schar makes white bread. Toast it up and see if your dad likes his sandwich with it.

[rehh05]

It seems that you have complicated symptoms... there may be more than one thing going on. Perhaps you could find a physician who could work with you to figure out what is what. It might not be celiac. It sounds like you need to have all of you vitamin levels run and a bunch of body systems looked at in my unprofessional medically uninformed opinion. It is terribly frustrating to not feel well and not know why... it’s awful. Find someone who will work with you.

[cyclinglady]

I was diagnosed with celiac disease (biopsy confirmed) five years ago.  My hubby was not so fortunate.  He had two doctors recommend a gluten free diet 18 years ago.  The diet worked.  Does he have celiac disease?  We will never know because gluten makes him deathly ill.  We like feeling good and being able to work!  

You can trial the diet.  Try sticking with Whole Foods and avoid costly processed gluten free junk food.  You have nothing to lose.

[Posterboy]

On 9/11/2018 at 12:52 PM, PoorlyPixie said:

I don't remember what it feels like to not have reflux, acid, bile; to eat anything with no pain or gas or toilet trips;

PoorlyPixie,

For your fathers chronic fatigue try some Magnesium Citrate with meals.

See this constantly tired thread about fatigue.

https://www.celiac.com/forums/topic/122735-constantly-tired/?tab=comments#comment-997070

And have you checked into low stomach acid as a cause?

Most of the time you don't have enough stomach acid.  And we get low in Magnesium because of it.

Here is a good article about it.

Open Original Shared Link

And here is a good thread about bloating, GERD aka Hearturn and how treating/trying BetaineHCL capsules and how it helped brandi1969.

https://www.celiac.com/forums/topic/122303-extreme-bloat-help/?tab=comments#comment-995540

Here is a good article also on the role Magnesium plays in Chronic Fatigue especially when some one has Epstein Barr Virus (EBV).

Open Original Shared Link

I hope this is helpful but it is not medical advice.

There is probably more I could say about this issue of low stomach acid being diagnosed as high instead but that is probably enough to get you started on the right track.

Poorly Pixie this online article will give you several home test options to see if it too low of stomach to stop your bloating and heartburn the way it did for brandi.

Open Original Shared Link

good luck on your continued journey.

***** Again this is not medical advice but I hope it is helpful.

I only know it helped me.

“Consider what I say; and the Lord give thee understanding in all things”

2 Timothy 2:7 this included.

Posterboy by the grace of God,