LauraTX

Welcome to the forum.  What country are you located in?

What you describe doesn't sound like a typical presentation of DH.  While it wouldn't hurt to get tested for that and Celiac disease, have you been tested for other things, such as Sexually Transmitted Diseases?  Have you had cultures done, where they can see if there is bacteria or yeast there?  It just seems like something may have been missed, such as a bad yeast infection perhaps.  I would see another doctor for a second opinion.

Oh man I cannot stay away from those Cadbury Creme eggs.... nomnomnomnom

That's awesome!

I am so sorry for your loss.  We are here to help you out and get you the info you need to get tested properly.  One of my symptoms as an undiagnosed Celiac was neuropathy- horrible tingly itchy sensations that sometimes got painful, mostly in my legs.  I went through all kinds of testing for them to just tell me they don't know.  It was frustrating.  I still get it a little bit, but recently I started on Lyrica for my lupus/fibromyalgia and it has greatly helped with the leg sensations.  Lyrica is not a medicine you want to just stop immediately, if you run out and are on a higher dose that can cause adverse affects, so keep a supply on hand.  If your doctor just started you on it and you are on a low dose, they can increase the dose until a good level of relief is found.  The dosing can actually go pretty high but usually that is not needed. 

You saying putting water on for relief also sounds like my deal... I will wake up in the middle of the night, and my feet get dry and itchy, so I put on lotion.  So if you don't already, find a good hydrating lotion and keep all of your skin hydrated.  I use a store brand fragrance free lotion.  Drink lots of water, too.

So next step is to get to a GI doctor and get testing done.  Keep eating gluten until you get tested!

Some of the symptoms with your eyes and skin sound a little bit like Sjögren’s Disease.  You can inquire about getting tested for that, too... basically it drys out all the moist parts of your body.  It can go along with Celiac disease.  Open Original Shared Link

Also Lyrica is kind of pricey, but they do have a copay card that can help a little, if you need it and qualify: Open Original Shared Link

Lots of hugs to you, I hope we can help you get an answer.  

Very interesting that he is quite likely a seronegative celiac.  Hopefully the sister will see some improvement on a gluten-free diet, too, as it is likely she has the same thing.  

Im jealous!

What country are you in?  If you would like to go into your profile, edit profile, and put that in your signature, it will help people tailor their responses.  

For canned pears I think it is worth it to pay more for the name brand.  I usually buy the kind in light syrup or in juice, no artificial sweetners.  I know what you are talking about with the weird hard crap that some brand pass off as pears.  Like, really, you sell this?  LOL...  you could probably sprinkle sugar on them and put them in the fridge for a while to improve the flavor.  

Also, here is a recipe page I dug up. Looking at some of the stuff I found, you can use them in any pear recipe where you cook them, kind of like canned vs fresh peaches.  Open Original Shared Link

I certainly understand the fear of something else going wrong.  I am almost 30 and pretty much have the body of an 80 year old, lol.  I have Celiac, Lupus, and Common Variable Immunodeficiency, and the way I cope with my fear of things going out of whack is to just take care of my current problems to the best of my ability.  I am so anal retentive about eating gluten-free I am probably the model Celiac patient to the extreme.  For my other issues, I do treatments and medications on schedule, eat right, etc.  Also, pay attention to your body and don't hesitate to get things checked out.  Better to have a false alarm than to sit on something until it is really bad.  

With only being gluten-free for a week, it is going to take more time for things to change for the better.  In the meanwhile, maybe she can try whole prunes instead of just the juice.  I have bad constipation because of medications I am on, and I usually eat 5 prunes a day for regularity.  A psyllium fiber supplement can help, too.  Staying hydrated is important as well as avoiding foods that can contribute to constipation, like junk foods, cheese, etc.  Basically, any food that doesn't contribute to GI health needs to be minimized until the problems are under control.  Fruits(dried fruit packs a good punch), veggies, nuts, whole grains,  not too much fatty meals like meats or dairy.  Air popped or a fat free popcorn is really good for the go.  Steer her towards whole, naturally gluten-free foods and away from the packaged stuff for now.  A lot of the packaged gluten-free foods are still junk food.

I can understand her being terrified of laxatives, as they are not good for long term use in the most part.  Docusate sodium is a more gentle one that acts differently, doesn't have the cramping stuff like exlax.  Miralax/Restorolax is in its own category and doesn't work like the other pill laxatives... you can tell her it is like a slippery cocktail that helps things move along through.  It doesn't mess with things chemically and cause dependency like some of the stimulant laxatives.   If she is very constipated it will definitely be uncomfortable while her system gets itself cleared out, and then a daily maintenance dose can be figured out, and then you can decrease it and eventually discontinue use if it is tolerated.  Enemas can help clear out acute constipation, definitely not a long term solution, but for this and any problematic backups, it can help clear things out.  They may be weird, but they are easier to tolerate than those stimulant laxatives and all that cramping and pain.

It is also interesting that their bloodwork both was negative.  It may be worth checking to see if a total IgA and IgG level was drawn on either sibling, because if those are low, they can cause false negatives in the blood testing.  I am so sorry your family has to deal with things like a waitlist, and I understand and support the sister just going gluten-free now.  I think that is a good decision.  If she starts to think it isn't helping and wants to eat gluten again, try to get her to stay on it for as long as possible, because when someone is undiagnosed for a long time, it can take a long time for their intestines to heal up.

 

My son has celiac, I do not and I am addicted to bread. I sacrificed my bread for my son   When we eat out, I get gluten. When I am at work, I get gluten. Our dinners are pretty much completely gluten free except pasta night when we cook together. He likes leftovers

 

You are an awesome mommy  My husband does the same... he can get his gluten fix out of the house no problem.

Well man, I was searching for one out of products I know, and can't track one down.  Will look more tomorrow to try and hunt something down!

It could be possible that the others have not come back yet.  These tests tend to be shipped out to specialty labs that can take extra time.  Hopefully that is the case.

I am wondering is anyone of you notice a relation between lung and GI issues. I tend to alternate. After a recent bout of flu/bronchitis/pneumonia (with a bit of Asthma on the side) but no GI issues, i finally got all that better, and GI issues returned. Are these different ways to manifest the illness?  I am very curious about how these things relate, as I've been plagued by both (but usually not at the same time) my whole life. But maybe it just like if your foot is sore and you get whacked on the head you don't notice your foot anymore? 

There are inflammatory diseases that can manifest in this way.  Celiac disease can cause many symptoms, and can occur with other conditions and weaken your body if it is left untreated.  If you are going to be tested for Celiac disease, make double sure they run a total IgG and IgA level.  Low levels of those can cause these kinds of symptoms as well.  

Here is a link that may work Open Original Shared Link

That is awesome to hear!  Remember there still may be old product on the shelves, since those bars last a while.  But should be seeing them around about now.  I will definitely pick some up to try.

I have seen the thai kitchen ones at walmart.  Also, they make thin rice noodles that you cook by putting them into hot broth or water, they are so thin you can't boil them really to keep them intact.  I think thai kitchen makes them, as well as others.  Those may be good to have a larger quantity and control what broth you use- maybe put some dried noodles and broth in a mason jar and take it along where you are going.

Those thai kitchen noodle packets are pretty good.  Give you that ramen feeling.

Monkey girl (cute name) I get that. I have heard info on Dr. oz show that led me to discuss something with my own Dr. I don't base my health decisions on his show but on my own healthcare providers advice.

THIS is what people should be doing.  Get info but go to your doctor still.  Work with your doctor as a partner in your own health.  Great to hear (read) this, Fran.  

While this does not sound like the typical onset of Celiac disease-associated neuropathy, given your history of vitamin deficiencies and IBS, it would not hurt to get tested for Celiac disease.  However, in reference to the numbness and changing sides- that sounds like it is something different.  Have you had your neck examined and have the nerves checked or an MRI of that area?  Problems with the neck, nerves, or musculoskeletal system can cause those kinds of symptoms, and can be very dangerous if left untreated, so I would ask to have someone look at your neck and associated areas as well.

We are not doctors or experts in this area, so please get back to a doctor ASAP to have them look further into this.  If you do get tested for Celiac disease, do know that you have to be consuming gluten for the tests to be accurate, so don't start a gluten-free diet without talking to your doctor first.

Hi Laure, I don't have a clue what any of this means...and I think I need to  could you suggest a link that explains it easily..thank you.  

Lets see where did those links go....all the factsheets from Univ of Chicago are really helpful.

This explains all the antibody blood tests: Open Original Shared Link

Genetic tests: Open Original Shared Link

Endoscopy and 5-6 biopsy sites:  Open Original Shared Link

In fact, anyone who is needing to get info to their doctor on how to diagnose will highly benefit from just printing those 3 out and getting them to their doctor.  On the Open Original Shared Link website, some of the better, more technical info is under the "Medical professionals" column.  So, depending on what labs are available in a person's area, what the doctor feels comfortable doing, etc, it can really help to have that big list and the factsheets.

Welcome to the forum!

Despite some people and doctors associating Celiac disease with GI symptoms like diarrhea, Adults especially may have no GI symptoms at all, but have other symptoms.  Here is a page that details some: Open Original Shared Link

Open Original Shared Link

In fact, Open Original Shared Link

The only way to see if you are adequately absorbing nutrients is to get blood levels of them tested, and get an endoscopy to assess any possible damage to the villi, because that is where absorption happens.  With you being deficient in a few already, I would push to get Celiac testing, for sure. 

Yep, those are high blood levels.  No doubt there.