Beverage

i would say the blunting is a clear indicator of celiac - your levels are extremely high as well - id urge u to start eating gluten free and see how healthy you will become 👍🏼i saw my GI  on 8/13 to get my blood work done - 7.5 months post dx - my IgG and IgA levels initially were 156 and 106 and today i’m happy to report that they’ve dropped to 31.2 and 51.5 -the normal range is <19.9 on both  also my iron and ferritin saturation which used to be so low 7-8% is now 27% - all of my levels on my cbc panels are all normal where they were always abnormal - i feel better my skin and eyes look healthier and i’ve gained weight which is the only thing i didn’t want because i wasn’t underweight before! my GI dr says i look so much better and impressed with my hard work / in 3-6 months i’m hoping i get into the normal range - i had to share because i’m so happy 😌

Unfortunately your doctor was incorrect about celiacs all being skinny, actually many can be obese because they overeat because they feel like they are starving due to vitamin and mineral deficiencies. 
Because your sister has it means your chance of having it is around 44%. Given your test results, which are incredibly high, and your family history and genetic markers, I agree that you may not need a biopsy to confirm this, but be sure to discuss this with them. Even without symptoms your health risks are the same.

I had developed this issue but only after eating gluten free oats. Went back on my strict gluten-free diet, not oats, and now all is good. Obviously something you’re eating is causing your systems. Try an elimination diet. Write down everything. Stay strictly gluten-free. 
Let me know if I can help. Marsha

B vitamins regulate a lot in our bodies. I am finding much improvement in my sleep by adding specific B's, in addition to a multi-B supplement. And only take in the morning.  Lately, I have added B3 flushing niacin and niacinamide, and finding that really helps.  @knitty kitty probably would have more specific info on that.

List of his papers:
https://scholar.google.com/citations?hl=en&user=oRnx2NUAAAAJ&view_op=list_works&sortby=pubdate
 
One of his papers on covid and niacin:
Sufficient niacin supply: the missing puzzle piece to COVID-19, and beyond?
Dmitry Kats, Ph.D., M.P.H.
Division of Epidemiology and Biostatistics, EPIDEMIOLOGY, Cary, NC, USA
https://osf.io/uec3r/
 
His protocol for prevention, covid infection, long covid, and injury with the vax:
https://twitter.com/nia3in/status/1411332149236715521/photo/1

@Beverage is correct! Certain B vitamins can help with sleep.  Other B vitamins can help with the fatigue.
I take 1000 mg of Tryptophan and 50 mg of B6 (pyridoxine) an hour or so before bedtime to help me sleep.  I also take a magnesium citrate supplement.  Magnesium helps our muscles relax. Take the magnesium last.  Magnesium can coat the intestines preventing absorption of the other vitamins (or excess stomach acid).  
Tryptophan is a different form of Niacin (Vitamin B3).  Our bodies can make tryptophan from niacin (or Niacinamide) and vice versa, but it's an easy hack taking the tryptophan form.  Tryptophan promotes intestinal healing, too.
For the fatigue, take a B Complex in the morning and some additional thiamine (100 mg thiamine HCL or 50 mg benfotiamine or 50 mg allithiamine) with each meal.  Thiamine (and B12) can keep us awake at night, so don't take them too close to bedtime.  Remember our brains use as much thiamine just thinking as we use doing physical labor.  Allithiamine crosses the blood brain barrier, helps clear that brain fog, and provides energy to combat fatigue.  
Lysine is also helpful for better sleep and helps relieve anxiety.  Used daily, lysine has been proven to be as effective as an antidepressant without the side effects.  
Theanine can also help with relaxation.  Theanine is found in oolong tea as well as supplements.  
The B vitamins are water soluble and nontoxic.  So there's no need to worry about taking a B Complex plus individual B vitamins.  Our bodies excrete any excess in urine. 
Also, low Vitamin D contributes to depression.  Vitamin D levels in the seventies or eighties (nmol/l) allows our bodies to use Vitamin D as a hormone which can help regulate our immune systems and alleviate depression.  
Hope this helps!  Keep us posted on your progress!

I'm glad to hear you're into reading!  Here's an article that will help...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7428453/
"Be well: A potential role for vitamin B in COVID-19"
Pericarditis is a symptom of low thiamine.  
Doctors are treating Covid with high dose Thiamine, vitamin C, zinc and Vitamin D.
 

B vitamins regulate a lot in our bodies. I am finding much improvement in my sleep by adding specific B's, in addition to a multi-B supplement. And only take in the morning.  Lately, I have added B3 flushing niacin and niacinamide, and finding that really helps.  @knitty kitty probably would have more specific info on that.

Jenny, it sounds like some good education as to hidden sources of gluten and cross contamination issues would be helpful to you and your daughter. Recent studies show that most people who think they are eating gluten free are in fact only managing to eat a lower gluten diet. They have eliminated macro sources of gluten such as bread and pasta but are still getting significant gluten exposure from hidden sources and cross contamination. Is your daughter eating cafeteria food at the university or does she do her own food preparation? Understanding where gluten is tucked away in the food supply is really a learning process. For instance, who would ever think wheat would be found in Campbell's tomato soup (and in most canned soups, actually)? Or in most soy sauces? Or sin some kinds of chocolate syrup? Or in some meds and supplements? Some potato salads? Etc., etc., etc. I think it would be very difficult for an active young lady in the university setting to take this as seriously as it needs to be taken. You know, it's all such a bother and gets in the way of one's social life.

These are the kinds of thiamine I take.  They are gluten free.  
 
https://www.lifeextension.com/vitamins-supplements/item00925/mega-benfotiamine?gclid=EAIaIQobChMI-qqQ2YTr8QIVxPrICh2yHQOMEAAYASAAEgKlEvD_BwE
And...
https://www.pureformulas.com/allithiamine-fat-soluble-b1ttfd-50-mg-capsule-250-capsules-by-ecological-formulas.html
 
 

Thiamine is safe and nontoxic even in high doses.  
It can't hurt to try.   

Jenny, 
Your daughter's symptoms sound like mine when I was experiencing Gastrointestinal Beriberi.  
Gastrointestinal Beriberi is a result of a deficiency of thiamine (Vitamin B1).  Thiamine is required to provide energy to the body.  Thiamine is water soluble.  Thiamine can only be stored for a few weeks.  Thiamine deficiency can occur in as little as nine days.  More thiamine is required to fight infections.  
As an athlete, your daughter has a higher requirement for thiamine.  
Consuming a diet high in carbohydrates requires more thiamine.
The Gluten Free diet can be low in thiamine.  Gluten containing foods are required to be enriched with vitamins lost in processing.  Gluten free facsimile foods are not required to be enriched with vitamins.  
My doctors were clueless.  They didn't see anything wrong.  They wrote me off as hypochondriac.  Being a microbiologist and familiar with cell biology, I researched and found the answer in high dose Thiamine.  I began taking over the counter thiamine supplements and started improving within hours.  
This is an under recognized condition.  
"Elevated Lactate Secondary to Gastrointestinal Beriberi"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/
And....
https://www.healthline.com/health/refeeding-syndrome
Best wishes...
 

"I can deal with small trace gluten, of the sort where French Fries may be made in oil used to fry things with gluten, and I don't have to worry about things without gluten containing ingredients."
Why do you say this? Because you don't get an upset tummy? Low levels of gluten exposure may not produce noticeable symptoms but can still keep small bowel inflammation smoldering, even though imperceptibly. Honestly, you'd better take a look at that approach to avoiding gluten exposure. I'm not so sure your "spectrum" idea of celiac disease will serve you well over time or is even a valid construct. It would be better to say that for some celiacs, minor exposure to gluten produces dramatic symptoms while for others it may not seem to have an effect symptomatically.
 

@Keshavdas,
Gluten containing products are required by law to be enriched with vitamins and minerals to replace those lost in processing. 
Gluten free facsimile foods are not required to be enriched. 
We need thiamine Vitamin B1 to turn carbohydrates into energy for our bodies to work.   Meat and green leafy vegetables contain thiamine.  
If we eat a diet high in carbohydrates, we need more thiamine.  The pancreas uses lots of thiamine to make insulin and to break down those carbohydrates.  
Thiamine reduces bad cholesterol.  Thiamine is needed to break down fats, too.  
Nausea, dizziness, headaches and fatigue are all early symptoms of low thiamine.
https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/
I've experienced thiamine deficiency.  It's not fun.  I corrected my thiamine deficiency by supplementing with thiamine, a B Complex, and magnesium citrate (helps thiamine work).  

Hello Tony9K,
when I was diagnosed a year ago I felt very sad about my future life too. I felt "nothing would ever be the same", and I "won't be able to travel and socialise" and what not. In retrospect, I find these emotions rather exaggerated. I am socialising just fine with people over coffees or wine mostly (where I come from we have a very strong coffee culture where people basically meet in a cafe and sit with one espresso for 2 or more hours). I also travelled last week (5 days abroad) for the first time since the diagnosis. I took some gluten free snacks with me, but I didn't even need them. I ate boiled eggs, cheese, plain vegetables and fruit at a hotel buffet for breakfast, and afterwards I just snacked on nuts, fruit, yoghurt and corn on the cob for dinner. It is very hot, so I was not hungry at all. I met a friend where I was travelling and even joined her in a restaurant while she ate her meals. I felt only slightly awkward, but mostly I was drinking my drink and enjoyed our conversation. The first day I felt a bit crabby during her meal, and felt a lititle sorry for myself. But after the meal was finished, I ran across a food stall with corn on the cob, bought it, found a place to sit with a really nice view and felt like I was on top of the world :). I was just greatful that I was on this trip, seeing nice places, reuniting with my friend and enjoying pure taste of fruit and vegetables. Now, when I think of this trip, I don't remember anything about how I wasn't able to eat in a restaurant. I only have fond memories of it and I am looking forward to future trips! When I was diagnosed and feeling sad, another friend told me "Well, before you could do 100 things, and now you can do 99", and he was right. Still plenty out there to enjoy life and we should focus on those things instead. And I don't think anyone will mind our lunch box or a pack of nuts while they enjoy our company!

I think that many of us change our priorities throughout our lives. If hanging out with friends and socializing is a main priority for you right now, I can understand how it might be difficult to stay gluten free, especially if you don't have any noticable symptoms. 

But knowing that being gluten free is something that you SHOULD do, I would recommend that you take a look at your life and evaluate if it is the life you want. And if it is not, how can you speed up the process toward getting that ideal life?

For instance, if your long-term goal includes getting married and having kids (a life where being gluten free might be more-manageable) are you doing anything to work toward that goal?  

Are you participating in activities that are good for you in ways other than just being gluten free? For instance, I got to a point where I left behind the friendships with people who only went to bars to drink, and instead starting spending my free time going hiking with friends (where it is really easy to stay gluten free because you bring your own picnic lunch).

Anyway, I would say don't beat yourself up too badly for breaking the rules. That won't do any good. But as long as you're not gluten free, I would pay extra attention to your health. Do things like get vitamin deficiency testing on a regular basis because you are going to be suffering from malnourishment to some degree. Pay attention to how you feel and if you can directly trace any problems back to something you ate. And don't let things get too bad. It might take 5 years, 10, or 20, but eventually health problems will catch up with you, and you don't want it to be too late to undo any damage.
Even if you don't go 100% gluten free, you could at least try to go gluten light. You can learn to identify safer options as you go through your life. Even reducing the volume of gluten in your diet can have a pretty massive effect.

Best of luck to you in finding the options that work for you!

 

Welcome to the forum. Your son's extremely high positive TTG test results would likely fit into the category of not needing a biopsy to confirm a celiac disease diagnosis, and the article below has more about this. 
It is possible that the results of any blood tests done after being gluten-free for 6 days will be skewed, and might be lower than if he had been eating gluten daily, so keep this in mind when you get the results.
 

This is a really good question, and we recently did an article on a doctor who believes that there will indeed be post-pandemic a spike in CD and diabetes cases:
 

Some things I was sensitive to were resolved with digestive enzymes and changing up cooking methods on others. But in the end your best bet is a food elimination diet and finding the triggers and avoiding them for a bit. Many of my issues have gone away over the years with food intolerance issue, while others have stayed or cropped up.
You mention processed foods being the issues, there might be a common additive like xantham gum, added oils, or stabilizing agents that is bothering you. Try the ingredients in one of the offending foods by themselves to find the culprit? Are you fine with most whole foods as they are?

What a hideous ordeal you have been through!  As a retired RN, C-difficile comes to mind.  This is severe persistent diarrhea that is only treated by antibiotics.  A stool culture is needed for diagnosis. The prednisone can lower your immune response, and make you more susceptible to infections.  C-diff diarrhea is often very explosive and watery, with a green tinge.  The possitive Babinsky is usually associated with the central nervous system, and I would not be surprised if this is a latent covid thing.   I am so hoping you have a positive out come.  Keep us posted.
 

I really can’t tell you how much I appreciate your (and everyone’s) responses to this. Is there is food sensitivity test I can take that can help me figure out if I am sensitive or intolerant to other foods?
Yes my GI was worried about that, but I have been medicine to prevent that and my endoscopy did not show signs of gastritis I guess? 

It is really time consuming to grocery shop at first, though once you figure out which brands you like and which stores carry which things, it does get easier & quicker. But you'll probably have to dedicate more time to it at first (and unfortunately it is generally more expensive).
Look for the "certified gluten free" labeling and "gluten free" labeling (good to read up on the differences - CGF is under 10ppm (parts per million) & tested for compliance, gluten-free is less than 20ppm and testing protocol is at the discretion of the manufacturer).
Just be aware that if you're eating a lot of servings of packaged food, you may still be getting enough gluten to cause symptoms/reactions and trigger an autoimmune response and you make need to continue to tweak your diet. This is what happened to me. 
I have good luck ordering online and having products delivered to my house - this can be a huge time saver. Stores such as Target let you sort grocery items on the website and narrow down the selection so you only see gluten-free. Free delivery over $35, so no extra cost. If there's a product I use on repeat & it's something that keeps well, I'll get 5+ at once to save time (like boxes of pasta). Amazon and WalMart (which in my area also carries a really good selection of gluten-free products at the store), are also my go-to's for online food ordering.
My household is gluten-free to keep me safe & symptom-free, so I order a lot of stuff this way for family members who eat gluten-free but don't need to medically.
Lots of grocery stores have dedicated gluten-free sections (or "natural" sections where they keep a lot of the gluten-free items), so that can help narrow it down. 
Take pictures of products and brands you like as you try them and make a folder on your phone (or a list in a notes app), so you can refer back (I always think I'm going to remember the gluten-free crackers I like the best and which stores carry them, but I never do).
My strategy is going to 3-4 grocery stores routinely, so in a month I go to a different one each week & stock up for the next 4 weeks with the things I can only get at that store.

If you are going to try the gluten free diet, please consider this.  I had to make my kitchen 100% gluten free before I felt better. I got rid of all pots & pans with non-stick coating and cast iron skillets, also wooden spoons.  My boyfriend can have gluten beer in the house, but if he wants toast, he makes that in a little kitchenette in the garage.  If you are making anything with gluten flour, that gets into the air and isn't safe.  Also, is there any home remodeling going on?  Dust from cutting glued wood products like plywood or chipboard and some older wall boards / plaster may contain something. Is he exposed to glue in any form?  Envelopes?  Craft glue?

Hi Kristi,
There are plenty of people with celiac disease around who have had emotional/mental type symptoms.  There is a thread topic on "Anger, quick temper, depression" on the forum from years ago and similar threads pop up fairly regularly..
Some things that can affect mood are vitamin/mineral deficiencies.  Vitamin D is one possibility but there are others.  Another possible issue is the thyroid replacement hormone levels you are taking may be off.  Thyroid hormone being low could lead to weight gain and depression.  So maybe something to get checked out.
You could get a multi-mineral and multi-vitamin to deal with deficiencies.  But it's best to get a doctor to check your levels first.
It does take time to adapt to eating gluten-free though.
 

No, I know you're not trying to scold me, Trents. I do know all these things, and I try to do them. It just gets a little exhausting. We live in tiny town that is at least an hour from any major city, so there are no places nearby that offer any sort of Celiac friendly option. Generally, when the family goes out to eat, it's at Braum's or the local burger joint or Taco Bell. There is literally zero option anywhere within an hour from us. There is a Mexican chain location about 40 minutes away that does offer gluten-free options, but they are only gluten-sensitive options, not truly gluten-free, and when I try to explain to them my situation, I think they believe I'm just being picky. This is Texas. We fry our bread here. haha
My family is VERY supportive, and my husband bends over backwards to get things for me from the store when he runs to the store to get something for a movie night, and he always makes sure I have the Cali Kitchen gluten-free pizzas for me in the fridge when they order pizza from the pizza place. I think he knows my physical symptoms are mild, so he doesn't understand that it is seriously damaging my gut if I continue to eat gluten. He has ordered all types of stuff off the internet, snack foods and crazy desserts that are specialty certified gluten-free things, but they are so fattening that I avoid them. He really does try, bless his heart. We've been married 24 years, and this is just a huge change from having almost a quarter of a century together living differently. Oh, and he did buy some GlutenX. He thinks that will solve all my problems. hehe
I do know all these things you told me. I was really just hoping someone could commiserate a little because I'm the only one I know who has it. I think the main thing is that I get so frustrated and feel deprived, and I feel like I should be THIN, and I'm not. I also read that after going gluten free, it's normal to gain some weight when your body starts properly absorbing nutrients again. ARGH! Food is my #1 enemy, and my body is my #2 enemy.
Anyway, thanks for the input. I'll get over it.