GFinDC

Hi K,

I am nightshade free also.  Nightshade foods include potatoes, tomatoes, peppers and eggplant.  They all contain various kinds of alkaloids that can cause joint pain in some people.

My joint pain went away after a month or so nightshade and soy free.  Hopefully that will happen for you also.  But if not, being nightshade free might reduce the joint inflammation some.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/myocarditis

The link describes myocarditis, and suggests meds to treat blood pressure and possible edema.

Hi Christine.

The start of the gluten-free diet can be tough.  There is lots of learn about ingredients and risks that we aren't used to thinking about.  I figure 6 months is a fairly good time frame for getting over the basic part of learning the gluten-free diet.  Things do get easier.

Some restaurants have gluten-free items on their menus.  You can often do a search online and find the menu items that gluten-free and any special info like notifying servers before ordering etc.  But I suggest you skip eating out for 6 months anyway.  It is safer to eat the food you cook at home while getting used to things.

A whole foods diet is a good way to get started.  No or very little processed foods.  Instead eat meats, veggies, eggs, nuts and fruit.  When you get something in the grocery look for foods with 3 ingredients or less.

There are celiac support groups in some areas.  Also some facebook groups for celiacs are around various cities.  You may not have symptoms right now, but you may develop symptoms later.  Hopefully not though.

There are restaurants that serve gluten-free food.  You can also bring your own food to some restaurants and just get a drink or something simple form them.  Ask first of course.

8 hours ago, BNGed8 said:

Hello,

Thank you for your reply. After reviewing my blood test, it does not seem like they tested my B vitamin levels. After researching, I did take it upon myself to get B12 vitamins (1,000 mcg) to see if it could help. It has only been like 2 weeks, so I assume it wouldn't help that quick. Would you recommend a higher dose or any other supplements?

I do have a neurologist appointment today as well as my primary Thursday. So I can also ask them if there is anything else they recommend. Just so tough with Anxiety when you google your symptoms and BAM! MS or ALS are the top results.

Hi,

B-12 is good to take, but a B complex is also a good idea.  The damage to our small intestine lining is what causes the deficiencies.  That damage takes time to heal, possibly months or more.  So absorption of nutrients should improve but not be back to normal for a while.

You can also get good amounts of vitamin D from oily fish like salmon, mackeral, sardines and tuna.  Caffeine may play a role in your muscle issues.  So it might help to reduce or eliminate caffeine for now.

Betaine HCL and digestive enzymes may improve your digestion efficiency also.

I suggest you concentrate on improving your gluten-free diet instead of thinking about ALS or MS possibilities.  Celiac disease is something you can take action on (the gluten-free diet) without any doctor input.  And the gluten-free diet can vastly improve your health over time. 

1 hour ago, BNGed8 said:

Hello All,

I was recently diagnosed with Celiac a little over a month ago after losing 25 pounds, excruciating abdominal pains & extreme anxiety. In my blood work they also found a pretty bad Vitamin D deficiency (17, when the lowest normal level is 30). I am currently on a 50,000 IU/week pill for this. After about 3 weeks of a gluten free diet, the abdominal pains have pretty much subsided. However, it seems I have developed pain on the right side of my body only as well as other sensations such as pins & needles/numbness.

I was recently in the ER after I felt numbness down the whole right side of my body, but my brain CT & MRI came back normal. I am now scheduled to go the neurologist for a possible lumbar puncture & spinal MRI to try and rule out MS all together. I have been told that Celiac & Anxiety can cause weird pains and different for everyone. I was just wondering if anyone else has experienced a one sided pain or sensations previously mentioned as I feel like I am going crazy.

Is there any other supplements people have taken to help as well. Any input will greatly be appreciated.

Thanks

Hi,

I took 50K IU of vitamin D also by RX.  The RX didn't seem to help my vitamin D deficiency much.  I switched to NutriGold vitamin D and also Nature Made vitamin D.  They did the trick.  So my thinking is don't trust the RX vitamin D to work.  Your body also needs boron to retain vitamin D.

B vitamins are important for nerve health.  Did the doctor find any problems in the B vitamin levels?

Hi Pinkee,

The rash on your elbows could be DH (dermatitis herpetiformis).  DH is a skin condition only people with celiac disease get.  It usually appears as a rash in a symmetrical pattern on the body, both elbows, both knees etc.

People with DH sometimes don't test positive on the endoscopy.  That could be because the antibodies are concentrated in the skin vs the gut.  The DH rash is usually very itchy and can cause small lesions/blisters.  A dermatologist can test for DH by taking  a tiny skin sample from next to a lesion, not on it.  They check the skin sample for IgA antibodies.

You mentioned a brain lesion?  There is a UBO (unidentified bright object) that people with gluten ataxia may show on a brain scan.  Gluten ataxia can cause them and also nerve problems.  B vitamins are helpful for nerve issues.

I suggest you not be surprised if your blood tests are negative.  Having negative blood tests does not mean you don't have celiac disease though.  Celiac is not easy to identify sometimes.

Vitamin D and boron along with calcium are all helpful for bones.  CVS sells a supplement they call Triple Joint Health that may help.  You can get vitamin D from sunshine and from oily fish like salmon, tuna, mackeral and sardines.

Hi Sandy,

Gluten may not be the exact cause of your pain but it's hard to be sure.  Wine is usually considered to be gluten-free.  But there are other elements in wine that could cause a reaction.  Sulfites in wine can cause some people to react.  Or the pain could be caused by something else you ate or drank that day.

I suggest you try some milk of magnesia to clear out your GI system.  Pepto Bismol has at least some soothing effect on the GI system also.  Another thing to try is anti-histamines (hay fever meds).  Since we  don't know exactly the cause it is worth trying a few different simple things IMHO.

Peppermint tea may help also.  Pepto Bismol has aspirin in it.  I hope you feel better soon. 

5 hours ago, Jackie Garrett said:

Thankyou for your comment, yes I do believe I have leaky gut, I find that coming off Dairy for me is helping me with my symptoms improving so much, sometimes I weaken and have something that I fancy with Dairy in and I soon know with my reactions to it. 

If you are talking about ice cream, there are non-dairy subs out there now.  So Delicious makes coconut ice cream subs and Halo top makes some also.  They both also make regular dairy ice cream too so check labels.

Are all your vitamin and mineral levels good?  They should be checked since you are having GI /nerve symptoms. 

1 hour ago, Margarita said:

Thank you so much for the warm welcome! I still don't really know anything about forums and sub forums but i'm sure I'll figure it out. I was actually wondering how people have their diagnosis attached under their comments? Could you please help me with that?

Hi Margarita,

It used to be a person could add a signature under their profile.  If you click the down arrow next to your profile picture at top right of the page, and click "settings" you can find the signature option in the left side list.

If you click the "Forums" link in the top blue bar/banner, it will take you to a list of forum sub sections.  Scrolling down that list you can find the technical help sub forum.

https://www.celiac.com/forums/forum/44-boardforum-technical-help/

Thread on setting signature:

https://www.celiac.com/forums/topic/122913-change-signature-information/

Welcome to the forum Margarita!

Please take a look through the DH (dermatitis herpetiformis) sub-forum for more info on DH.  You may find some helpful info in there.

11 hours ago, justthemom said:

Yes, I suppose that is a possibility, but my daughter is currently testing negative for celiac on bloodwork and biopsy, so we haven’t investigated anyone else in the family. I was just browsing around looking for pics to compare to the rash she gets from gluten, spotted this all too familiar picture of tiny deep seated blisters on fingertips and thought I’d share my experience. 

The DH photo bank is a good place to start looking.

On 6/18/2021 at 8:51 AM, justthemom said:

About 3 months ago, my college age daughter suddenly developed a host of symptoms that were quickly narrowed down to whenever she would eat anything containing gluten. 
- immediate dramatic bloating 

-soft stools

-headache

-joint pain and muscle aches in limbs

-numbness/pins and needles in arms or legs that would last for hours

-large patches of a fine itchy rash with that would develop within 30 minutes to 2 hours after eating

A friend with celiac led her to suspect it and internet search let her know to continue eating gluten until testing was complete. She was able to get into a GI who ordered the bloodwork panel, which was all negative. She was then scheduled for a biopsy two weeks later which was “normal” and the biopsies did not show any damage. 

At this point she was just content to go on a fully gluten free diet and stop experiencing the symptoms, and she has been doing great and feeling well. All symptoms stopped immediately, except for two times she was cross contaminated. Once was at a Chipotle (she assumes the same gloves touching tortillas then the cheese all day), and the other was a gluten “sensitive” Mac and cheese from a restaurant. But both times, with the tiny amount that could be in cross contamination, the reaction was just as dramatic if not more so, especially the rash. 
 

Is it typical for a non-celiac gluten sensitivity to be so dramatic? 
Is it possible that she has Celiac and the testing was done too soon after onset to detect antibodies or damage? (all completed within a month of her first symptom). 
Anything else we should consider? 

 

There is a condition some celiacs get called DH (dermatitis herpetiformis).  It causes itchy blisters on the skin, usually in a symmetrical pattern on the body.  So both elbows or both knees etc.  People with DH can have negative serology (blood test results) for celiac antibodies.  They also may not show up on endoscopy.  DH tends to get worse if not treated with the gluten-free diet.  The issue is the antibodies deposit in the skin and cause the blister/lesion reaction.  That may be why the blood and endoscopy tests don't show DH well.  The antibodies are going somewhere else i.e. the skin.

On 6/17/2021 at 12:26 PM, Scott Adams said:

Also, I checked their web site and those shakes are certified gluten-free, but like many of these type of products they do contain a lot of ingredients, some of which could cause issues in sensitive people. For example some people have issues with legumes (they are gluten-free), and it looks like these contain a lot of pea protein:

• Vanilla Ingredients: Purified Water, Organic Agave Syrup, Organic Pea Protein, Organic Brown Rice Syrup Solids, Organic High Linoleic Sunflower Oil, Organic Agave Inulin, Organic Vanilla Flavor (Natural Flavors, Organic Vanilla Extract), Organic Coconut Oil, Vitamin and Mineral Blend†, Organic Flaxseed Oil, Organic Sunflower Lecithin, Organic Rosemary Extract, Organic Spectra™ Phytonutrient Blend‡.

The full list of ingredients is:

Ingredients

Purified Water, Organic Agave Syrup, Organic Pea Protein, Organic Brown Rice Syrup Solids, Organic High Linoleic Sunflower Oil, Organic Agave Inulin, Organic Vanilla Flavor (Natural Flavors, Organic Vanilla Extract), Organic Coconut Oil, Vitamin and Mineral Blend†, Organic Flaxseed Oil, Organic Sunflower Lecithin, Organic Rosemary Extract, Organic Spectra™ Phytonutrient Blend‡.
† Vitamin and Mineral Blend: Potassium Citrate, Dimagnesium Phosphate, Tricalcium Phosphate, Choline Bitartrate, Sodium Chloride, Potassium Chloride, Sodium Ascorbate, Sodium Molybdate, DL-Alpha-Tocopheryl Acetate, Beta Carotene, Niacinamide, Ferric Pyrophosphate, Vitamin A Palmitate, Calcium Pantothenate, Zinc Oxide, Magnesium Citrate, Copper Sulfate, Manganese Sulfate, Sodium Selenite, Chromium Picolinate, Biotin, Folic Acid, Thiamine Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Phytonadione, Potassium Iodide, Cyanocobalamin (Vitamin B12), Cholecalciferol (Vitamin D3).
‡ Organic Spectra™ Phytonutrient Blend: Extracts and Concentrates from: Organic Broccoli, Organic CoffeeBerry®, Organic Green Tea, Organic Turmeric, Organic Kale, Organic Broccoli Sprout, Organic Acai, Organic Cinnamon, Organic Garlic, Organic Tomato, Organic Blueberry, Organic Carrot, Organic Beet, Organic Raspberry, Organic Spinach, Organic Tart Cherry, Organic Blackberry.

***********************************************************************

That's a lot of different ingredients!  Two of them would make me sick for sure, tomato and carrot.  Not because they are gluten but because I became sensitized to them.

I agree with ditching the Chex cereal.  Several people have reported having symptoms from eating Chex cereals in the past, even the supposedly gluten-free Chex cereals.

6 hours ago, J Morgan said:

Thank you for this information: I really already am (and have been for 7 years) the strict gluten-free diet. So I hope there is another solution out there. Again, I am so grateful for the response. 

COVID can cause GI symptoms also.

13 hours ago, Aaron275 said:

Hi,

One day last week I ate eggs for breakfast. I seemed to tolerate them fine and had no noticeable reaction to them.

A few days later, I drank a can of Coca-Cola at about 4 pm. Then, the next morning I ate eggs again at about 11 am. This time I reacted to the eggs and felt bad for several hours.

Could this be a delayed reaction from the can of soda?

The fact that I was able to tolerate eggs the first time makes me think the soda is the problem. I know soda is terrible for me but I hadn't considered the possibility that it could be causing other food intolerances.

What do you think?

If your stomach/digestion is upset, anything you put in it can make it react.

On 6/11/2021 at 12:31 PM, lhu7 said:

I have had celiac for 3 years, but have had stomach issues all my life. My stomach issues have clear up for the most part. A few of the symptoms I deal with on the daily is fatigue, brain fog, bloating and constipation. I have always had an aversion to fruit and vegetables, which could be arfid. I used to be a go getter and willing to do anything, but the past years I have felt depressed and alone. I just had a check up endoscopy and everything looked good except my disaccharide levels were all low. I am thinking maybe something that to do with pancreatic enzymes and not properly digesting food. I crave carbs and eat a lot of them, which might signal that they aren’t being broken down. Thoughts? 

Craving carbs could be a diabetes symptom.  Not feeling well, being tired is also a possible diabetes symptom.  Digestive problems are another possible diabetes symptom.  Maybe you can get your A1C level checked?

23 hours ago, trents said:

I believe the Costco rotisserie chicken at our Costco in Tumwater, WA is labeled gluten free but I'll try to remember to check that next time we get one. It doesn't seem to cause me problems. I'm not a particularly sensitive celiac so minor amounts of gluten as you might get in cross contamination may not trigger a noticeable reaction in my case.

The Walmart rotisserie chicken in 45701 zip code is safe for me, no reactions.  That being said, it is not uncommon for newly diagnose gluten-free eaters to react to many foods as their digestive system is damaged and needs time to heal.  So foods that bother a person at the beginning may be fine later on.

I'd suggest avoiding the rotisserie chickens though as it's better and safer to make your own food at the start IMHO.

Hi CarolynH,

You may be having trouble with dairy because of celiac damage.  Celiac disease can damage the villi that line the small intestine.  Those villi make an enzyme called lactase that breaks down the dairy sugar.  When the dairy sugar is not broken down it is eaten by bacteria that cause gas and bloating.  Most people call this lactose intolerance, and that's pretty much right.  So, I'd suggest you switch to non-dairy milks for a few months.  Almond milks or coconut milk are ok.  Avoid the oat milks and soy milks though.

Some of us do react to oats in addition to wheat, rye and barley.  It is good if you can avoid all processed foods for 6 months to start out.  A simpler diet is easier for our digestive system to handle.  Plus you don't have to spend as much time reading food labels in the store.

If you go off dairy its helpful to take a calcium, vitamin D and boron supplement also.  Many of those supplements also have magnesium which may by helpful for the constipation.

Hi laynuh,

The first thing to try for your vitamin D replenishment is to get out in the sun between 10 AM and 2 PM.  Your skin naturally makes lots of vitamin D when exposed to sunlight.  At this time of year sunlight is the fastest way to improve your vitamin D levels.

I agree that dairy should  be avoided.  The enzyme that digests cow milk sugar is made by the villi lining of the small intestine.  Since your villi are damaged or missing, you won't be able to properly digest dairy.  That will result in lactose intolerance symptoms that include diahhrea, gas, maybe some pain too..

You can try some pysillium husks to help with diahhrea also.  A teaspoon in whatever you are eating should help.

You may want to supplement with digestive enzymes and Betaine HCL for a while.  They can help to break down and process foods.

I suggest you go on a whole foods diet with no processed foods.  Meats, eggs, veggies and nuts and fruits are good food and are usually gluten-free.  Another grain to avoid is oats as some celiacs react to them.

Try to not eat the same foods every day.  We can become sensitized to foods we eat often while our guts are inflamed.  So vary the foods every few days.

You should get a calcium / vitamin D / Boron supplement also.

Hi Sam101,

Do you which blood test you had?  Often doctors will do only the ttg IgA test initially.  Some people don't make IgA type antibodies so they always fail to show up on those IgA tests.  There are several other antibody tests that can be done like DGP IgG and EMA.

On 5/22/2021 at 10:22 AM, JenniK said:

P.s. on the topic of feeling unfairly fat, I forgot to add that i don’t even eat gluten-free substitute foods. I discovered most of them make me sick, and they are almost all empty calories with almost negative nutrition. I prepare almost everything i eat myself, and mostly it comes out basically low carb: meat, spinach, eggs. 
 

i think mine is still inflammation from my gluten challenge. (I went gluten-free to heal my ibs 2.5 years ago, got so much better that I recently thought i was healed, did a gluten challenge and found celiac 😕) 

It’s been 7 weeks now that i have been gluten-free again. I still feel like you could stick a pin in me and water and air would start spewing everywhere. (And the joint pain has kept me from exercising.) Aside from gluten i have been off corn for a year. Aa of last week, I have mostly given up dairy, even though i could tolerate it while i was gluten-free before. I am also giving up nuts, especially almonds, bc i think they make my joint pain worse in my hands. I don’t know what else to do to combat the swelling and inflammation. Help anyone?

 

Hi,

Some people with joint pain do better if they avoid nightshades.  That might be something to try.

Hi,

DH is hard to get rid of without a very strict gluten-free diet.  But even then it takes time, months or more.   Some people with DH say they have better results by cutting out foods with iodine in them.

The tests depend on antibodies being active in the blood stream.  So they aren't accurate if the antibodies levels are falling because of the gluten-free diet.  The tests are DGP IgA, DGP IgG, EMA, total serum IgA, ttg IgA.  The total serum IgA test is a measurement of your immune systems general ability to make IgA type antibodies of any kind.  Since the IgA antibodies tests depend on that, they are useless in people who don't really make IgA antibodies.

People often say they have stronger reactions after stopping gluten and then starting eating it again.  So some people don't finish the gluten challenge because of their reactions.

Currently their are no tests available that can detect celiac without the gluten challenge.  Some of us have an immune reaction to oats also.  Dairy can also be a problem.