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Diagnosed with Celiac? Labs interpreted?

Jonathan B.

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Jonathan B. Newbie
Jonathan B.
Posted

Hey all! I'm pretty sure I've got celiacs, but not sure to what extent I'm sensitive to gluten. I have many of the symptoms.

Doctor took biopsies from esophagus and intestines and the biopsies showed I have celiac. They wanted me to get a blood panel and below are the results. Can anyone help me with it? What does it mean that I tested negative to the Endomysial Antibody (IgA), tested a 7  (high) for the tTG and tested normal for the IgA?

Does it mean that I have celiacs, but just not full blown celiacs?  Thanks for any feedback! I have a follow up appointment with my GI doc, but thought I'd ask you guys.

All the best,

Jonathan

 

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tessa25 Rising Star
tessa25
Posted

The IGA test being in the normal range just means that the TTG IGA result is valid.

You only need one positive to need an endoscopy to verify celiac. Your TTG IGA is weak positive for celiac. And you say the biopsy showed celiac. So you have celiac. That means no more gluten ever again. No cheating allowed with celiac. Sorry.

CYA: I'm not a doc.

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Tessa is correct, you have a positive biopsy and positive blood test. Welcome to the club you never wanted to join. Do check out the Newbie 101 thread at the top of the Coping section as it has a lot of important info. Ask any questions you need to and expect that you may have some ups and downs while you are getting the hang of the gluten free lifestyle. We are here to help in any way we can.

Jonathan B. Newbie
Jonathan B.
Posted
  • Author

Thanks for the welcome, Tessa and Raven. I appreciate the "tough love", Tessa. Lol. I guess I should share my story! This will be a little scattered....

So, to be honest I'm actually kind of excited to know what I have. It's becoming all clear now as to my symptoms. I have control over celiac, mostly, and me being a pretty disciplined person likes to rise to these kinds of occasions.

I'm 39 (turn 40 in a few days!) and when I was 15, I was diagnosed with a skin condition called nonsystemic morphea. This was the beginning of my autoimmune stuff. About 4 years ago, I was sent to a rheumatologist because I kept on having joint and muscle pain.  He had me do a sleep study and I was diagnosed with sleep apnea and now I wear a CPAP mask to help me get good, deep sleep.  After I was diagnosed with sleep apnea, he diagnosed me with fibromyalgia. (I wonder now if being on a gluten free diet will help me with this fatigue and muscle pains that I sometimes experience.)

So, about 2 years ago, I started to have numbness and tingling in my feet. It was the weirdest thing. I used to run a lot and thought I'd give it a break, but I still have it to this day. I'm also a nurse who is on his feet for 12 hours a day, and at least 3 days a week. Fortunately, I have great custom inserts that have saved my butt. I truly love being a nurse in the ER! Around this time I also started to have abdominal pain, and really bad gas.

Another symptom that I've had off and on are blisters on my knees and butt cheeks. I thought it was just contact dermatitis that I got when working in the yard or working out on spongy mats. However, when I saw that dermatitis herpetiformis is a symptom of celiacs, a big "DING DING!" went off.  

Another symptom that JUST happened AFTER my biopsy was I got a canker sore on my inside lower lip. It happened after I ate some Pringles, I think. I've never had a canker sore before, and again, I've learned that this is a symptom. I think the Lord was really looking out for me and was diagnosed when I did so that hopefully I can make the change before any big damage is done.

I feel that my GI issues have been pretty mild, though. I've never had bad diarrhea, bloating, etc. So, I wonder if I'm just "kind of" sensitive. I wonder if that's why my level was just "high" and not "crazy high."

I enjoy working out, so I do have a question about supplements like amino acids and creatine. Does anyone know anything about the safety here for gluten free?

I've already been gluten free for 2 days (to my knowledge). I have been eating really healthy for the past for years, so to be completely gluten free hasn't been too bad... yet. I did download an excellent app on iTunes that allows you to scan barcodes and it'll tell you if they are gluten free. You guys probably already have it!

Also, can I really get exposed by kissing my girl?

How long does it take for your body to recover from gluten? Will it take a while for it to get out of my system? Has anyone on here experienced the dissipating of the leg tingling?

Anyways, like I said, I'm actually really excited to make this big change and to start feeling a lot better. I am a pretty resilient person and have just been coping with the hand dealt to me. I'm thankful to have a disease that can be modified with lifestyle and that I don't have to just suffer with it and go through life wondering what in the world is wrong with me.

I'm thankful for this site and hope to be a part of this community in some shape or form.

Blessings and all the best,
Jonathan

 

 

 

 

cyclinglady Grand Master
cyclinglady
Posted

So glad to hear that you know where you stand!  

I can not help you with the protein stuff for working out.  I have never used the stuff even prior to my diagnosis.  I am sure others will chime in.  

Yes.  You can get "glutened" by kissing someon who ate gluten.  Supportive significant others will wash their hands and brush their teeth before kissing you.  I make my kid wash her hands when she returns from school or was at a friend's baking or whatever.  

It can take months to years, yes, years to recover.  Remember, celiac disease is an autoimmune disorder that flares-up (antibodies increase) when exposed to gluten.  Each person is different as to how long those flare-up lasts. It is not about how long gluten is in the body.  

Tingling?  Neurological symptoms can take the longest, but they can resolve!   Get check for vitamin deficiencies as many of us were deficient at the time we were diagnosed.  

Eating out has a greater risk of cross contamination.  Best to avoid it until you feel better.  Stick to Whole Foods and indulge in processed foods sparingly.  You might heal faster.  Wish I heeded that advice!  

 

Ennis-TX Grand Master
Ennis-TX
Posted

You should probably read up on the 101 guide, yes you can get exposed from kissing someone if they have eaten gluten in the past 24-48hours. CC is a major issue you might both be better off changing the whole house to gluten-free to make the transition easier, I will post a list of alternatives for gluten free and other options also. Going to a whole foods only diet for a bit will make it easier and boost your healing, sort of a jump start.  We do suggest also dropping dairy and oats for the first few months normally and you can see if they bother you bringing them back in a bit later.

As a nurse you will probably comprehend this better then anyone about CC, gluten is a protein, like blood, smaller then a germ and not killed by disinfectants. IF your not sure you can clean it where a CSI tech can not find the traces throw it out. Tupperware, scratched dishes, cooking utensils with scratches or notches/necks on them all need to go. Cast iron and some pan and skillets can be cleaned by running in the self clean in your oven over 500F destroying the proteins then follow up with a goo scrubbing and dishwasher (new scrub brush). You will also want to throw out any condiment jars that would have CC from spoons or knives in them, any spices, or foods that your unsure of. Also go through and clean out all the crumbs etc from your drawers, cabinets, fridge, etc. New utensil organizers will help, new utensils of a different color if in a shared house, freezer paper to lay down for a clean cooking/prepping environment (this makes cleaning a breeze also), You can also line pans and and grills with parchment paper or foil, and for god sake throw out hte old toaster and get a new one lol. Umm quick and easy change over and simple way to avoid CC, is to use stuff like nordicware microwave cook ware, they have steamers, omelette makers, egg cookers, grill plates, and the splatter covers save you for various reasons. A you will find a new crockpot/rice cooker/steamer combo to be your new best friend for a while and making simple stews in it in batches a life saver, crock pot liners make clean up a breeze for soups.

As to proteins and stuff for working out I trust 3 major brands for my workout supplements (I pretty much am body building myself) Jarrow, Nutra-Key, and MRM are the major ones I trust for blends and supplements. There are a few others that are more expensive and some pure proteins. Blend wise (Note I use vegan protein powders for various reasons) Nutra Key V-Pro, MRM Veggie Elite, and Jarrow has a nice new plant blend and a optimal plant blend. Jarrow also has Various others like the only gluten-free certified Hemp protein still out there and tons of various supplementation options.  I use a ton of things honestly in various rotating combinations.

You mention tingling this can be from various defienices, and a combination with gluten nerve damage like gluten ataxia (which I also have). Look into magnesium and B-vitamin supplementation these are common issues with celiac disease. Magnesium wise I would suggest Natural Vitality Calm or Doctors Best, the Natural Vitality is a Magnesium Citrate which can be a bit harsh on your gut and you want to start off in 1/4tsp doses and work it up over a week to the full dose or adjust up to more taking 2-3 times a day to keep from getting lows. Doctors Best is much easier on the stomach and does not have the laxative effect that can happen with the citrate, I would suggest taking it at recommended dosing or take half a dose twice a day adjust as you feel you might need it.  B-vitamins I take a liquid blend from Liquid Health called Stress & Energy I also take Neurological Support from same company 1tbsp each 2-3 times a day before meals you will notice great improvement in your life, mental well being, nerves, etc from these as B-vitamin issues are common with celiac.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

Jmg Mentor
Jmg
Posted

Hello and welcome :)

The good news is you've found an excellent site for info and support. The even better news is that with a positive attitude like yours you should find adjusting much easier than most. I wish I'd been so optimistic when I first put two and two together!

This by the way:

19 hours ago, Jonathan B. said:

I feel that my GI issues have been pretty mild, though. I've never had bad diarrhea, bloating, etc.

Is actually not unusual. Everyone thinks that the classic celiac symptoms are most prevalent but the reality is that more people present with primarily non GI symptoms. I tested negative but gluten hits me neurologically more than in the stomach. The good news is that those symptoms did go but as CL says above they may take a little longer to subside. 

Best of luck!

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      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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