I feel like I’m going crazy! Please help me

[MiahL]

Hi all

This is a long one so please bear with me. 
 

I was recently diagnosed with moderate ulcerative colitis - which took years to diagnose because of the pandemic. I had an endoscopy and colonoscopy. Before the scopes, I was tested for celiac and everything in-between. Literally everything that could have been causing my symptoms. I have the HLA-DQ8 & DQ7 genes - but my IGA & IGG were both normal (IGA 1.88g/l). My endoscopy showed mild blunting and scalloping of the villi - however the biopsy (yes just the one) was negative. I was told I could continue eating gluten unless it upset the ulcerative colitis. 
 

A few months after, I began to experience a lot of different symptoms that have thrown me through a loop. I have tingling and numbness in my feet and hands (particularly my left foot), body aches (muscle, joint and particularly bone aches), muscle twitches, headaches (normal forehead headaches but can be one sided and switches sides), brain fog, fatigue, nausea & vomiting, shaking (hands and body), pain in my cheekbone (weird one I know), severe hair loss, constipation and/or diarrhea. Sometimes I find myself running to the bathroom after a meal too.
 

I went to see my previous doctor and have spoken to my GI - I’ve since been tested for MS, lupus, RA, diabetes, APS - literally everything. All ruled out. My previous doctor told me I was being a hypochondriac and said it was fibromyalgia. I decided to put myself on a gluten free diet to test my body and the symptoms almost completely went away until I ate gluten again.
 

Naturally, I’ve changed doctors. I took all my paperwork and results in to her and she automatically said my symptoms matched celiac, I have the gene and I had blunting. At the time of the scope, I did not do the gluten challenge as I wasn’t even aware of it - I wasn’t eating gluten free but I was so sick and anxious that I hardly stomached a few mouthfuls of food (any type of food) per day for a few months prior. This new dr also said that because it was only the one biopsy, it could have been taken from the wrong place. She wants me to get a second opinion and stay gluten free until I can get the appointment and then start the gluten challenge - this is because my reactions have been so bad. 
 

She is also rechecking all of my vitamin levels. They were checked recently but she wants to check my active b12 among other things. I have had many vitamin deficiencies in the past- b12 included. 
 

I suppose I just need to know your thoughts? This new doctor said it might not even be necessary to get a second opinion because I had the blunting and I’m reacting so badly. But I feel like I’m losing my mind!! I feel so deflated and defeated.

 

Thanks!

[trents]

How can they declare the biopsy to be negative when there was villi blunting? Blunting of the villi is the gold standard of celiac diagnosis. If you had NCGS (Non Celiac Gluten Sensitivity) you would not have blunted villi. And all your symptoms scream celiac disease. And your genetic testing established that you have potential for celiac disease. Your antibody testing was likely negative because you weren't consuming enough gluten. I agree with the second doctor and now you need to focus on achieving a gluten free lifestyle.

Edited April 11, 2023 by trents

[plumbago]

I was a little confused about the villi blunting and then the biopsy being negative, like @trents. The only thing that occurred to me was that on visualization only, they could see blunting. If you have the biopsy report, can you type in the language they used? Because that's the missing key here.

[trents]

The other tell-tale factor here is that when you removed gluten from your diet, your symptoms got dramatically better.

[trents]

12 minutes ago, plumbago said:

I was a little confused about the villi blunting and then the biopsy being negative, like @trents. The only thing that occurred to me was that on visualization only, they could see blunting. If you have the biopsy report, can you type in the language they used? Because that's the missing key here.

Yes, but you would think that if the blunting was pronounced enough to see it with the scope then it would have to show up upon microscopic inspection.

[plumbago]

1 minute ago, trents said:

Yes, but you would think that if the blunting was pronounced enough to see it with the scope then it would have to show up upon microscopic inspection.

Not necessarily. Especially if we know that 1) blunting is not uniform; and 2) they only took one biopsy. I would like to know the language the pathologist wrote, @MiahL if you can find the report and then type those words in.

[MiahL]

7 minutes ago, plumbago said:

Not necessarily. Especially if we know that 1) blunting is not uniform; and 2) they only took one biopsy. I would like to know the language the pathologist wrote, @MiahL if you can find the report and then type those words in.

The report from the scope says: 

Duodenum: Normal to D3. Mild features of celiac's with blunting of the villi and scalloping.

Unfortunately I don’t have the pathology report of the biopsy. I was never given it - just told it was negative. 

[trents]

11 minutes ago, MiahL said:

The report from the scope says: 

Duodenum: Normal to D3. Mild features of celiac's with blunting of the villi and scalloping.

Unfortunately I don’t have the pathology report of the biopsy. I was never given it - just told it was negative. 

Well, plumbago must have nailed it. The biopsy was shoddily done and they did not sample enough areas to find the damage. But, as I said before, if the blunting is apparent during the scoping, that is a positive for celiac disease.

[plumbago]

I agree with Trents @MiahL, and you should probably proceed as if this is a clear cut case of celiac disease. I just can't believe the way things are done, sometimes. Maybe I've just gotten lucky with my 'scopes and biopsies. But because I'm a bit demanding and neurotically focused on details of my diagnoses, I would kindly request to see the actual biopsy report. Depending on when it was done, it may simply not be ready yet - oops, but you said they said it was negative. Maybe you can ask why only one biopsy was taken and/or, then, is it common, in their experience, for the gastroenterologist to see blunting but the biopsy to come back "negative," (so weird to just say negative!). Whenever patients I work with get any kind of scope (colo- or endo-) they are always, and I mean always, given a report with photos and impressions and how the patient prepped for and tolerated the procedure, and then it will say something along the lines of "patho report to follow," or some such. And after all non-routine scopes, there is generally a follow up visit or call. So maybe you can work on that. Anyway, good luck. There's a lot of info on this site to get you started on a celiac disease diet and lifestyle.

[trents]

And I don't think you need a gluten challenge and another scoping. You have all the evidence you need to conclude you have celiac disease.

I would also recommend starting vitamin and mineral supplementation with a gluten-free high potency B-complex, sublingual B12, 5-10k of D3 and magnesium glycinate. You described neurological symptoms in your original post. You needn't worry about supplementation toxicity as the B vitamins are water soluble and 5-10k of D3 is a safe level.

[Rick Sanchez]

17 minutes ago, trents said:

And I don't think you need a gluten challenge and another scoping. You have all the evidence you need to conclude you have celiac disease.

I would also recommend starting vitamin and mineral supplementation with a gluten-free high potency B-complex, sublingual B12, 5-10k of D3 and magnesium glycinate. You described neurological symptoms in your original post. You needn't worry about supplementation toxicity as the B vitamins are water soluble and 5-10k of D3 is a safe level.

Yep.  Most of the symptoms, save maybe the shakey hands, which could just be severe, scream B deficiency.  Might need injections until the gut heals?  Catch 22, can't absorb because of damage, nerves can't communicate to repair without it.

On top of, I have to mention spirolina. Helped me, good source of several Bs and others.

[Wheatwacked]

13 hours ago, MiahL said:

3 hours ago, MiahL said:

Mild features of celiac's with blunting of the villi and scalloping.

told me I was being a hypochondriac and said it was fibromyalgia.

Jeez Louise, the endoscopy report says it in plain english. As if fibromyalgia isn't real.

Who's side are they on? and who is it on the other side?

Using Marsh Scores to Diagnose Celiac Disease  "Most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3."

  This is a picture of Marsh 3. Follow the link for pictures of Marsh  1 and 2

[Wheatwacked]

You new doctor sounds like a keeper.

Make sure to look at Vitamin D (25-Hydroxyvitamin D) plasma. Research, and my own experience indicates that higher levels around 80 ng/ml (equivelant to 200 nmole/L) provide protection from autoimmune diseases. As my vitamin D went up I became less acutely affected by cross contamination.  Vitamin D and the Immune System

High homocysteine levels indicate inflammation and can be caused by low B6, B12, Choline, Folate and/or Taurine.  Doctors here in the US tend to scoff at and ignore Choline and Taurine but they are Essential nutrients that we do not make enough endogenously and so need in our diet. 

          Effect of taurine supplementation on plasma homocysteine levels  "In conclusion, taurine is an effective nutrient that antagonizes Hcy levels. Therefore, this study suggests that sufficient taurine intake might be an effective way of preventing cardiovascular diseases, such as atherosclerosis."

         Choline, SIBO, and Pregnancy: What’s the Deal?    "Choline is an essential nutrient for proper growth, development, and overall function of the human body, yet nine out of 10 Americans don’t get enough. "

         Vitamin D Is Not as Toxic as Was Once Thought   Ekwaru et al recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL.

 

[MiahL]

Thanks so much everyone! 
 

It’s all been incredibly stressful and frustrating not having answers! 
 

I’m definitely sticking with gluten free from now on!