My Story--Looking For Similar People

[dch028]

Hi all. Glad to be here and to have this forum. Thanks in advance for all replies.

 

June 2013: Sudden fever, swollen glands, white spots on tonsils, fatigue

--went to doctor to test negative for strep, given antibiotics anyway. Two weeks goes by and throat is less sore but still covered with white spots. Extremely tired. Back to doctor, given stronger antibiotic. Weeks go by. No improvement.

 

July 2013:

--Second doctor. Tested positive for Mononucleosis. Given an oral steroid to help tonsils (prednisone). The curious thing about this visit is that my blood pressure is, for the first time in my life, high. 155/95.

 

August 2013: Still very fatigued but other symptoms gone. Mouth ulcers begin to appear constantly. 3-5 at a time and constantly my companion. Blood pressure remains high.

 

October 2013: Mouth ulcers constantly, and a new symptom appears. I have almost constant muscle twitches. All over my body and random. These will twitch a few times then move to a new spot. No weakness or anythingelse. Blood pressure still high.

 

December 2013: Fatigue is gone for several months now. Have seen the doctor 5-7 times with no explanation for my constant mouth ulcers that still persist. Kidney panels and blood tests all normal. My blood pressure remains high and I am now on 5mg lisinopril to control it.

 

At this point I developed a new symptom, Geographic tongue. Bald spots on my tongue will appear randomly and migrate. I went gluten free and the spots were gone in 8 days. Over Christmas I ate "normally" and the spots returned in about a week. I have tested negative on the blood panel for celiac disease and all of my nutrient tests were normal.

 

The two constants right now are the mouth ulcers and the muscle twitches, as well as my high blood pressure. Could these symptoms, as well as the geographic tongue, be caused by nutritional deficiencies due to celiac? The gluten free diet seemed to help the mouth ulcers and the geographic tongue, but these could have just been a mere coincidence in timing.

 

Has anyone experienced anything similar and could my symptoms be a sign of celiac, or do I need to continue my quest for an alternate diagnosis?

 

Thank you so much for the replies!

[1desperateladysaved]

I have high blood pressure, at times, that is helped by getting enough nutrients.  My fatigue I use to have gave way after getting rid of most of the foods I didn't tolerate.  Mono seemed to really begin my celiac symptoms 30 years back.  My other symptoms  included bloating, and mind fog.  Supplements helped my symptoms, but I really didn't recover until I went gluten free.

[dch028]

Is it possible to be nutrient deficient and yet have normal nutrient blood samples?

[1desperateladysaved]

My Functional Medicine Nurse says that it is.  She explained that the blood needs to be kept stable, so if the body is short, the blood steals nutrients from the cells.  One lab tests white blood cells in order to see what the nutrient levels are inside of cells.  This is a Spectra Cell test and has recently been accepted by Medicare.

 

D

[NoGlutenCooties]

I agree with DesperateLady and her nurse - nutrient deficiencies will often show up in the blood last.  As an example, that's part of why Celiac causes osteopenia and osteoporosis - the body isn't absorbing enough calcium (along with Vit D and magnesium) so it steals it from the bones.  But the blood levels can be normal for quite some time.  From a survival standpoint, it is more important for the body to have calcium in the blood than it is for it to be in the bones.

[dch028]

That's good information, thank you. Have any of you experiences muscle twitching with celiac?

[kareng]

That's good information, thank you. Have any of you experiences muscle twitching with celiac?

 

 

I think those can sometimes be due to a  vitamin deficiency.  And Celiac can cause vitamin deficiencies

[nvsmom]

I get the twitches in some muscles but it's not severe. It's enough that I can watch my muscles bounce around but it doesn't last long. Quad twitches are the most obvious and common for me.

 

I get mouth sores too. Those are related to many autoimmune diseases though. I still get them on occasion, but not as often as I did while eating gluten. They often happen when I get an autoimmune flare-up of some sort; they arrive with fatigue, headaches, arhralgias, sometimes swollen glands, and general feelings of unwellness. I have mistakenly thought I was getting sick a few times when they hit.

 

Mine all hit without any vitamin deficiencies. I'm at the low end of normal for A and zinc, and my D is in the lower bottom third of normal. For me, I think it is unrelated to vitamine deficiencies... could be wrong though.