selectivefocus

Will a celiac blood test show up negative if you have active/new DH lesions and the last time you had gluten was less than a week ago? How long does the body produce celiac antibodies after eliminating gluten?

On 1/2/2019 at 6:20 PM, Posterboy said:

selectivefocus,

It sounds like you might have Pernicious Anemia (PA).

I used to have the same problems.  Get you some sublingual B-12 and see if it doesn't help your tingling limbs.

It did mine!  This is is not medical advice but I hope it is helpful.

Here is a nice overview from Webmd on tingling in hands of feet.  I will quote their information about how it can be B-12 deficiency being undiagnosed in their vitamin deficiency paragraph. Read the whole article when you get a chance to rule out other causes.

https://www.webmd.com/brain/tingling-in-hands-and-feet#1

"A B12 deficiency, for example, can lead to pernicious anemia, an important cause of peripheral neuropathy."

2 Corinthians 1: 3, 4

3 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Posterboy,

Stop spamming everyone's posts with "I think you have pernicious anemia". You have also messaged me and probably everyone else saying they have that. Neuropathy caused by gluten exposure (or similar proteins i.e. oats or brown rice) is a real thing. It doesn't mean I don't process B12. I have anemia, the regular old iron deficiency kind, and have been tested several times. My B12 is fine. I am not diabetic.

On 1/2/2019 at 10:49 AM, Ennis_TX said:

Baked sweet potatoes might be good, not being a nightshade they are easier carbs. But you are lucky, I had to give up all carbs. Carbs first started giving me distention and bloody stools, then later even cheating a bit spiked my blood sugar. I am now paleo/keto no carbs I eat fat for energy and my uses it instead.

Rice...rice protein sometimes even gives me edema issues with water retention. I still have it sometimes but very rare occasions.

Bread wise I was using Julian Bakery Paleo Bread, the almond bread and seed breads I still sometime order even though I own my own bakery. I often make my own with coconut flour bases as it is much cheaper to produce.
 

I would be careful of calling anyone with this disease lucky. We all have our problems. All of my children have different intolerances caused by Celiac. I can't have eggs or red meat. I have one with an anaphylactic allergy to almonds and cashews, one with a horrible soy allergy and salicylate intolerance. She misses school all the time. None of us are lucky, we just cope.

I get horrible neuropathy down my legs into my feet, as well as low back pain and pelvic pain. I get such similar glutening symptoms from brown rice cakes/pasta/flour and oats that I don't touch oats (even certified) and I usually don't touch brown rice either. (It is their proteins not cross contamination). That said, I am 28 weeks pregnant, and I ran out of my Simple Kneads gluten-free bread, so I started eating rice cakes as a carb alternative until my next shipment of Simple Kneads could get here. And my neuropathy is soooooo bad right now. It's like my legs and feet are half asleep with the tingling. I can't tolerate tapioca, xanthan gum, brown rice, oats...and if I don't eat enough dry carbs I end up feeling nauseous because well, I'm pregnant. Just glad my bread gets here today so I can go back to feeling well and eating my daily toast.

When I was first being diagnosed I didn't understand why my celiac allergist was so sad about not being able to eat oats. He was like "yeah, I had a salad for breakfast". In my naive little mind, I thought "surely it can't be that bad!" Celiac is such a complicated disease and sometimes I forget I even have it until I screw up. It's hard not to berate yourself and be like "well, you shouldn't have eaten that!" I just get sick of having so many food intolerances sometimes. I'm usually a look on the bright side person and thank God for potatoes (LOL) but the neuropathy is what always drags me down. 

I love Primal kitchen mayo. 

Read this:

https://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/

I react to Swiss MIss. It has whey in it I believe, and also corn, but this is not a gluten reaction, even though it can seem that way. Has she been tested for the top 8 allergens since going gluten free? She likely has other intolerances. Cocoa also gives me migraines. 

I didn't read any above replies, but you probably have other intolerances that are going unchecked. We all do. Right now I feel as though I have been glutened (liver pain, neuropathy, lethargy, just feeling really crappy) and I'm pretty sure it's from brown rice pasta and cheese. My oldest daughter tested positive to the top 8 allergens after going gluten free and she can no longer eat eggs and corn. You need to be hyper aware of what you are putting in your mouth and how it makes you feel. Just because it is gluten free does not mean it is good for you. I can't tolerate brown rice, tapioca, any gums, eggs, red meat, most dairy, and I have a salicylate intolerance. Gluten free is not cut and dry, especially if you rely on prepackaged foods. 

https://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/

Anemia was my first symptom. If you don't want to live very long, by all means, continue eating gluten. Are you so set in your ways that you cannot change your diet at 68? Do you have children or grandchildren? People who care about you? If you continue eating gluten you are willingly and knowingly killing yourself. Your quality of life would be greatly improved and you could feel so much better. Obviously you have more than just anemia going on or you would not have gone to the doctors and gotten a biopsy.

7 minutes ago, Ennis_TX said:

It has to due with some nutrient deficiency, bit like osteoporosis from my understanding. I have a book somewhere i need to dig out and get the list for you but damaged gut leads to malabosrobtion of certain nutrients related to bone and dental health leading to degrading dental health this can be further compacted by a more acidic mouth and or dry mouth that can come as secondary issues.

But yeah I brush a hour after each meal, mouthwash and floss....still have 3 cavities right now, 1 dead tooth, and a abscess around the root of one tooth that I have to keep taking herbal remedies for to keep it from getting infected (gets infected and fills up with pus if I stop, and recently got infected again and has cleared up again to clear fluid) Had the dang thing for over a year now.....just no dental coverage and no money.

I hear you. I had 2 molars pulled a couple years ago pre diagnosis for $100. But I have 3 teeth with major cavities currently and they're so bad I don't think they can save them. Honestly the only thing that has prevented further damage was being diagnosed obviously, but using Xyliwhite toothpaste. I had a back molar that was as you described with pus and infection, and the xylitol is better than conventional toothpaste at keeping bacteria away. They also have mouth wash. I also recommend Nutribiotic GSE in capsules or tablets.

I know the mechanism behind why it happens I just wish it didn't happen and I had nice teeth again  

How many people have dental issues associated with celiac? I had nice teeth up until my 2nd child was born. Thats also when most of my other symptoms exploded. My teeth are really bad now and while I think I have stopped some damage from continuing there's nothing they can do for a few of my teeth. It's seriously so depressing. I'm grateful for the celiac diagnosis because it was like ok, it's not just me, there was a reason my teeth went downhill so fast out of nowhere.

8 hours ago, Maddiecl said:

Hello, it's me again!

So I have been gluten-free for 3 months after Celiac diagnosis.  I am 25 and I was sick about 3 years prior to diagnosis.  The recovery process has been extremely slow and has been full of many ups and downs.  I assume the damage to my small intestine was pretty bad because the Dr who did my Endoscopy told me he was already sure I had Celiac disease just from seeing my intestines before we had the biopsy results. 

Why is it that when I read a reputable book, or look on Merk Manuals, or other websites that should be very reliable it says it takes 2-3 weeks to heal from Celiac disease.  This can't possibly be true, is it?  Why do so many Doctors including my own, believe recovery is so quick and easy.   

I have noticed some improvements since I have been gluten-free but I am FAR from being back to my old self.  Also, the things that are improving are things I wasn't even blaming celiac disease for in the first place like cold sores and trouble sleeping and painful periods. However, nausea, fatigue, and occasional bloating are still quite prominent. Does this sound like a normal pattern of recovery? I have done everything I can think of to try to heal quickly.  I am taking probiotics and digestive enzymes,  I am in the middle of an elimination diet, I have made my kitchen gluten-free.   

I would love your opinion.  Do I just need to be patient with the healing process or should I look into other possible causes or even the dreaded refractory celiac?  If you had a long recovery story I would love to hear about it. 

Thanks!

 

 

I've been gluten free 13 months.  Many of my issues have resolved, but I've gained a lot of other food issues in the wake of eliminating gluten because my gut was so damaged and my immune system was so overactive. My daughters have now joined me in this awful club. It takes a long time. I'd say in the first month my DH on my hands disappeared and my liver and spleen stopped hurting.  But I'm still healing. 

11 minutes ago, Ennis_TX said:

Jarrow Enzymes Plus....they are porcine enzymes no mold about it. Same stuff your get via RX for pancreatic enzyme deficiency.....stuff works wonders.

However I found another one that does not!

10 minutes ago, Ennis_TX said:

Jarrow Enzymes Plus....they are porcine enzymes no mold about it. Same stuff your get via RX for pancreatic enzyme deficiency.....stuff works wonders.

Still contains black mold unfortunately

9 minutes ago, Ennis_TX said:

I have a theory that the body had some association of these foods being a problem while fighting the gluten if they were staples. You removed the gluten and now you body has these whole defense force on standby and overly active. They see anything suspicious and open fire guns blazing with a immune reaction. Just remove them for now and try them again in a few months and see if your body has removed them from the kill on sight list.

My theory is similar. For someone with undiagnosed celiac, I attribute gluten to being like a hurricane. It keeps your immune system constantly distracted and you can't see the damage it is causing. When the hurricane is taken away, your immune system realizes all the damage that has been done and it goes into overdrive. The other component is that celiac, especially long term undiagnosed celiac, damages your liver and pancreas and the ability to make adequate amounts of digestive enzymes. One of my biggest symptoms was constant unrelenting liver and spleen pain that went away after I went gluten free. I would not have realized this connection if my allergist did not draw my enzymes and they came back really, really low. So if your body is not digesting foods, and undigested food proteins make their way into your intestines and blood stream, you are going to have issues. I think my daughter would likely benefit from digestive enzymes, her panel came back negative for mold. I can't take digestive enzymes because i have  a mold allergy and my histamine reaction is severe. That said, I went a lot longer undiagnosed than she did. 

Hey all. So I have posted about my 9 year old a few times here. I took her off of gluten in October. Back in April 2017 she had a food allergy panel done. She only came up positive for cows milk and just barely. She just had the same panel done a couple weeks back, and came up positive on EVERYTHING and in low-moderate amounts. She had been telling me that eggs are making her feel sick lately and I already knew she had issues with dairy, but came up positive on wheat, corn, soy, peanut, egg white, and cows milk.

This same thing happened to me after I eliminated gluten. All of a sudden I had a million other food sensitivities. I have theories on why this is, but what do you all think? 

I realize this is an old thread, but in the interest of giving more people info who are looking for it, I'll add my 2 cents  I get DH around my mouth, blisters on my lips, and DH on my hands. My 8 year old gets it on her face around her nose, and my 5 year old gets it on her knees initially, but then it spreads up and down her legs if she has had a lot of gluten, or she keeps ingesting it, and it will keep going for days. She has the worse DH out of all of us. It starts immediately however--within a couple hours. My 2 year old gets eczema patches, not really DH bubbles/blisters, within hours of ingesting gluten. I should also add that I have been gluten free for 13 months now, and my DH has lessened in severity quite a bit even if I get glutened. It's only a few bubbles, whereas both of my hands were totally covered.

1 hour ago, plumbago said:

I completely understand.

The only other thing I wanted to add was that if you do decide to do shakes (aka smoothies) make sure you really let that blender roll! Meaning, keep it blending for a good long while. I put all my veggies and fruit in (and water), and blend it, then I add ice and just let it go while I am doing my morning thing (cleaning, cooking, getting ready for work). The blender is going for at least 5-7 minutes. Some people buy a vitamix blender, which costs about $200-$300. I find my Osterizer does well, I just gotta let it blend for a while, and yes, it's a bit loud. At my old house, I would blend it  outside in the car port, so as not to bother the others. And finally, are you sure your daughter is not getting glutened at school?

We actually have a Vitamix. It's well worth the investment for a celiac who makes everything from scratch! When we first got it I was making very spinach heavy smoothies thinking it was sooooo good for me, until I ended up with terrible joint pain from the oxalates! We fell out of making smoothies with it since we moved last September. 

Anyway! I pack lunch and snack every day for her and her sister. They are not allowed to share food at school. I am meticulous about the food I buy and the food I give them so I don't think that's a possibility. I am fortunate to be stay at home mom so my girls get homemade good food every day. In addition to all of this nonsense, she has an anaphylactic almond allergy. Last school year a child at her old school gave her what appeared to be a peanut m&m, but it was almond, and she had to be rushed to the emergency room. My whole life food wise is bananas. HAHA

20 minutes ago, plumbago said:

At any one time in someone's life, especially a child's where change is constant/necessary, the body is busy with its assigned activities, including mobilizing against various antigens - might this temporarily raise counts of the various types of white blood cells? Although I probably should not speculate, the doctor may think that a case of an eosinophil count of 6.3  is not too bad when he or she has likely seen counts of 35 to 60. The same sort of thinking is probably happening with the neutrophil count. Those with celiac disease tend to have high eosinophil counts. If you are concerned, go for another opinion, maybe even take her to that allergist you went to. I agree with the recommendation below to follow up with the doctor. If you can pull down her labs online, you should be able to send a message to the doc. That's where I would start.

Yes I have read that about eosinophils and celiac. What is frustrating is that each individual patient is different and an abnormal blood test should not be disregarded just because it isn't as "bad as it could be". Thanks for your input. 

13 minutes ago, plumbago said:

Ok, but Miralax is just as much a medicine as senna is! Just cause senna comes in a pill form doesn't make it any more of a medicine than something you drink. My .02.

Sorry, I should have clarified. My implication was not that these medicines are not necessary for her or anyone else. She prescribed her daily zyrtec because I said she was having frequent headaches and automatically gave her a diagnosis of pollen allergies when she has no issue with seasonal allergies. :/ Navigating celiac with myself and my kids has jaded me with doctors.

19 minutes ago, kareng said:

I would ask the doctor why he or she considers that normal?  There are reasons it might be Ok right now.  But I am not a doctor nor do I know your child’s recent medical history

They did the same thing with mine before I was diagnosed! I had abnormal WBC and my red blood cells were all wonky.  I begged for a referral to an allergist and he was the only doctor to look further into my issues. 

3 minutes ago, plumbago said:

Sounds like you have a definite handle on the dietary aspect of constipation. Sometimes when children's routines change and there may be a different voiding pattern, children will withhold due to unfamiliar surroundings. There are other reasons to avoid going, such as pain. I remember I used to have pain as a child. There may be something that can be done. Perhaps if you do decided to increase fiber intake, it will help soften things up. If you feel she's getting a sufficient amount as is and you don't want to add any more fiber, you can possibly talk to your pediatrician about a stool softener (senna, doculace), but I am not sure if those are safe for children or not.

I saw you posted about her blood test results on another thread, it may be helpful to include that information here, too, just for people to have as much information as possible. 

Plumbago

What's frustrating is that her doctor just thinks a pill cures everything. I will literally try everything before putting my child or myself on a medicine unless its absolutely necessary. I think once this package of Miralax is gone, I'm going to stop, and see what happens with her on a limited dairy diet.

My daughter had a CBC done, and her white blood cells are off. The dr, said everything was normal. I can view her results online however, and her nuetrophils are low, and eosinophils are high. Anyone have any idea what that means? Her neutrophils were 45 and the threshold was 50-80, and eosinophils were 6.3 and the threshhold is 0-3. 

55 minutes ago, cyclinglady said:

Here is another clue to her constipation woes.    Sounds like she does not like veggies.  A very common struggle between child and parent!  I think KarenG made this her life long goal!  “How to get teenagers to eat more veggies” which is written in her celiac.com bio.   I do not think she won the battle or the war.  Turns out the the motivator was a girlfriend!  Ha!  ?  I do think KarenG attempted to hide veggies.  That might work!  

We love zucchini.   Tessa, I want some now!  Maybe some nice sautéed cabbage or spinach  would be nice for breakfast!  I have that in the frig.  Thinking bout my veggie garden.  Soon it will be time to plant zucchini.  

Finally, it does take time to heal.  Usually kids tend to heal faster but adhering to the diet or other issues can slow down healing.   Hang in there!  

She eats broccoli, green beans, and carrots fine, which we have almost every night with dinner. She usually has 3 or so servings of whole fruit per day and I am obnoxious about how much water she drinks. I am almost 32 years old and I like most everything, but I am not really a zucchini fan although I will eat it. I agree with the time to heal aspect of it. I read the chronic constipation can alter the integrity and shape and size of your colon and that you need to be on laxatives for 6-12 months to heal it. Does that sound like big pharma bogusness or is there truth to it? 

1 hour ago, cyclinglady said:

I think you need to determine the source.  While it may be attributed to celiac disease, it should have resolved or improved on a strict gluten free diet by now.    Many things can cause constipation (I am sure you have researched this):

Open Original Shared Link

You mentioned a milk protein intolerance? Maybe she has not out grown that intolerance.  It might not just be a lactose intolerance which more commonly associated with celiac disease (damaged villi can not release the enzymes to digest lactose).   I would consider eliminating all milk products for a few weeks.  

And... I am big in veggies too because they are a whole food and that is most always a good thing!  

So I definitely think she might still be intolerant, which is why I limit her to only a cup of organic whole milk per day. It doesn't bother her stomach at all, probably because it's high fat. She usually has it in her gluten-free cereal before school. Although, we had an Against The Grain plain cheese pizza last night for supper as a treat, and she felt very ill about 3 hours later, so I definitely think it's the dairy even though she didn't pop hot on her blood test to it. My other daughter had a really bad soy allergy as a baby, and recently tested negative to it, but it still makes her really sick depending on the type and quantity.