Feeling Worse

[elf41980]

Hi Everyone,

I was diagnosed Oct 1 biopsy and blood with celiac since then following a strict gluten-free diet. Only thing is I feel worse then ever. My legs hurt so bad sometimes most of the time , feels like I cant walk feels like burning and paralyzed. Ive gone for allergy testingand nothing came up. Really nothing has gotten better only worse. I dont understand .

Elf 

[Ennis-TX]

Have you had your vitamin and mineral levels checked? For me Magnesium was a huge issue that left many issues with leg pain, cramping, and a burning sensation that would travel over parts of my body.
Many gluten foods are sprayed with vitamins (enriched) so going gluten free and eating gluten free foods can make issues with nutrient absorption more apparent and many have issues with B-vitamins, magnesium, vitamin D etc. So taking proper and easy to absorb supplements can help til you heal enough to get more from natural whole foods.

Going over the newbie 101 section to see if you missed anything such as sources of CC and some precautions might help.

I might suggest keeping a food diary and eating a whole foods only diet and rotate your foods a bit to see if something your eating could be the culprit. It is not common to develop issues with other foods, although this does not sound like the case here. Just try to keep the diet balanced with sources of all your nutrients and eating enough calories.

 

[elf41980]

1 hour ago, Ennis_TX said:

Have you had your vitamin and mineral levels checked? For me Magnesium was a huge issue that left many issues with leg pain, cramping, and a burning sensation that would travel over parts of my body.
Many gluten foods are sprayed with vitamins (enriched) so going gluten free and eating gluten free foods can make issues with nutrient absorption more apparent and many have issues with B-vitamins, magnesium, vitamin D etc. So taking proper and easy to absorb supplements can help til you heal enough to get more from natural whole foods.

Going over the newbie 101 section to see if you missed anything such as sources of CC and some precautions might help.

I might suggest keeping a food diary and eating a whole foods only diet and rotate your foods a bit to see if something your eating could be the culprit. It is not common to develop issues with other foods, although this does not sound like the case here. Just try to keep the diet balanced with sources of all your nutrients and eating enough calories.

 

I can say I dont take my vitamin everyday maybe thats it. I definitely dont eat anything boxed or canned..that made me feel horrible the few times I ate them. Sometimes organic gluten-free chips but I dont think thats it I also use broth in soups but those brands say they are ok even in cross reference. Question if Im doing the whole foods and using new organic gluten-free spices is that ok or should they be plan?  

[cyclinglady]

Everything that Ennis said.  You also need time.  Remember you have an autoimmune disease that only happens to be triggered by gluten.  Gluten exposures set off an autoimmune response (like MS or lupus) that can go on for days, week or months.  Everyone is different.  Most celiacs report feeling well after a year.  Hang in there!  

[elf41980]

Is normal to feel worse before better? Because Im ok with that I just didn't expect it that's all. I think I was more asymptomatic had other  random autoimmune things. If its celiac that's ok just never had this leg thing before and its worse then the celiac..    

[cyclinglady]

You know for sure you have celiac disease.  That is the first thing you should address.  Make sure you are really gluten free.  It is why most of us recommend minimally processed foods (fruit, fresh veggies, rice, meat, fish, nuts, etc.).  If you buy gluten free packaged foods, look for them to be labeled.  Take a look at the Fasano diet which was developed one one of the celiac disease experts and his team in the US.  Many people feel worse because they go through withdrawals.  Many celiacs feel worse because they unwittingly make mistakes.  It is common to have set backs.  The learning curve for the  gluten-free diet is steep!  

Keep a food diary.  You might have some food intolerances due to a leaky gut (which is a bad term, but a real thing).  Nothing like garlic or almonds to upset my GI track, make my face break out (Rosacea), and feel all achy and fatigued.  But that is my intolerance.  Find yours.  

I was diagnosed with just anemia.  No GI issues.  But boy, if I make a mistake now, I get plenty of GI symptoms.   And those symptoms can change leaving me to second guess, “Did I eat gluten?”

Make sure your doctor runs a vitamin and mineral deficiencies panel.  Here is the link, so he does not think you (me) are making this up.  

University of Chicago:

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

Beyond Celiac (non-profit):

https://www.beyondceliac.org/living-with-celiac-disease/followup-testing/

If you do not get relief within another month or so, and you are not deficient in anything and you have had antibodies testing,  you might need to ask your doctor to test you for other autoimmune disorders.    Do not panic.  I have three autoimmune disorders and I am doing well.  

[elf41980]

Does anyone think it could be red wine? I’m really trying to think of everything I do.. sorry

 

[cyclinglady]

Red wine?  It is possible you could react to tannins found in red wine, but I would not worry about gluten.  Wine might not be good on a damaged gut.  It is probably not on the Fasano diet food list for this reason.  Give your liver a break.    Maybe abstain until you are feeling better?  

I also  autoimmune gastritis.  If it is flaring, I do not drink alcohol.  Just common sense.  

[cyclinglady]

Since you are still new to the diet and healing,  being low on vitamins and minerals seems like the most likely culprit for your leg pain.  But I am not a doctor.  

Allergy testing?  Not very accurate.  You can google.  

What made your doctor test for celiac disease?  

[Ranchers Wife]

Regarding the broth...

Almost all broth will contain some form of MSG (monosodium glutamate) which is a source of "umami" flavor, or an intensity of the taste.

MSG is a neurological stimulant, and it unfortunately  does not limit itself to the taste buds. It is a common migraine trigger, as well as a behavioral trigger for ADHD. You might be sensitive to it.

MSG is the chemically refined form... there are naturally occurring sources of the same chemical as well:

Yeast Extract, or Autolyzed Yeast Extract

Hydrolyzed Vegetable Protein (or corn protein, or soy protein)

Less commonly, Natural Flavor in a savory food item can actually be a source of MSG.

Natural sources wherein nobody adds anything to the food can be soy sauce (the fermented protein makes its own umami), aged cheese, smoked salmon.

I used to be terribly sensitive to these things, even Tamari (wheat free) soy sauce. But anymore, on a gluten free diet for a couple of years, I can tolerate a bit of natural umami without getting a migraine.

 

You might see if you are consuming these things, and eliminate them for a couple of weeks to see if it is helpful to you.

Good luck, I hope you feel better soon.

[Ennis-TX]

8 hours ago, Ranchers Wife said:

Regarding the broth...

Almost all broth will contain some form of MSG (monosodium glutamate) which is a source of "umami" flavor, or an intensity of the taste.

MSG is a neurological stimulant, and it unfortunately  does not limit itself to the taste buds. It is a common migraine trigger, as well as a behavioral trigger for ADHD. You might be sensitive to it.

MSG is the chemically refined form... there are naturally occurring sources of the same chemical as well:

Yeast Extract, or Autolyzed Yeast Extract

Hydrolyzed Vegetable Protein (or corn protein, or soy protein)

Less commonly, Natural Flavor in a savory food item can actually be a source of MSG.

Natural sources wherein nobody adds anything to the food can be soy sauce (the fermented protein makes its own umami), aged cheese, smoked salmon.

I used to be terribly sensitive to these things, even Tamari (wheat free) soy sauce. But anymore, on a gluten free diet for a couple of years, I can tolerate a bit of natural umami without getting a migraine.

 

You might see if you are consuming these things, and eliminate them for a couple of weeks to see if it is helpful to you.

Good luck, I hope you feel better soon.

It is not in ALL broths, there are a few that do not have the yeast extract oddly very few and it pissed me off every time I go to the store. I oddly found a Swanson Unsalted Cooking Stock this year...quite bland lacking any seasonings, flavorings etc. I used to use Pacific Foods STOCK (The broth has yeast extract), or this one Kitchen Basics (The chicken bone broth was the only one). I also have some supplement broths from Jarrow foods in powder form that are safe and give no issues.

[Keight]

Elf, I am feeling way more tired and lethargic than ever since going gluten-free. As cycling_lady has drummed into me, my body needs to heal. I suspect I have been Coeliac for decades. 

I have noted that I cannot tolerate lactose at all. I knew that before diagnosis, but since then, my body has been violently emphatic about it! I also react just as badly to things high in oxalates. Silverbeet and spinach are not for me right now. I am allergic to pineapple and some fruits give me minor allergy reactions. 

My point is to listen to all Ennis and c_l state above. I went and saw my GP for my very low blood pressure and hypoglycaemia, and I am glad I did. I feel reassured that my GP is helping me explore other possible underlying issues. 

Do keep a journal to help isolate possible food intolerances, nutritional imbalances, and if you haven't, do see a nutritionist. One who specialises in Coeliac and malnutrition. 

I am convinced our bodies are smarter than we are! Listen to it and respect what it tells you. 

Good luck and stay in contact via the forum. Lots of old posts have golden nuggets of information. 

[Leigh Anna]

When I was first diagnosed almost 4 years ago I immediately started following a strict gluten-free diet. But I was still feeling horrible. To google I went and found many resources including this website. Through that research I found out that there is gluten in many other products besides food. Check your beauty products. Shampoos, lotions, lip balms etc. Also, get rid of any of your non-stick coated pans that have scratches in them. I kept getting massive symptoms after eating. Turned out to be the non-stick pans that had been used for many gluten containing foods prior to my diagnosis. Anything thats been cooked in a coated pan has leached itself into those scratches and can get into whatever you’re cooking. Stainless is best for making sure you’re not getting any cc while cooking. Wooden spoons and cast iron can also cause this. Collanders hold onto gluten in those tiny little holes as well. I bought a new one thats just for gluten-free use. Toasters are major culprits. I have a 4 slot one and one side is just for gluten-free. I labelled my side with permanent marker. Look out for ordering foods at restaurants. Anything fried in the same oil as gluten containing foods will be cross contaminated. Probiotics and vitamins are very helpful as well. Its a lot to learn and a major adjustment but you’ll get the hang of it.

I use a couple of apps on my phone while shopping, they scan bar codes and tell you if the product has gluten in it. One is called ‘The gluten free scanner’ and the other ‘ipiit’ (thats not a typo, thats how its spelled) ipiit is great because you can choose from many different allergens you want to be alerted to. My kid is allergic to diary so I have that as an alert as well. Also, many celiacs have an intolerance to dairy/lactose. Luckily, I do not. It does take time for the body to heal after having regular exposure to something that is harmful to it. Be diligent and check every product your body absorbsI hope things start getting better for you soon!

[Beverage]

On 12/4/2019 at 12:46 PM, elf41980 said:

Is normal to feel worse before better? Because Im ok with that I just didn't expect it that's all. I think I was more asymptomatic had other  random autoimmune things. If its celiac that's ok just never had this leg thing before and its worse then the celiac..    

Absolutely you can feel worse...at first. As soon as I gave up gluten, I felt like I had the worst flu of my life, like I was hit by a truck that backed up over me several times. Bones ached, I felt weak, poisoned, I could barely stand up, I felt like I was 100 years old.

Before going gluten-free, I did not have the so-called typical intestinal symptoms, but I had gained some weight. I lost 30 lbs in a month after going gluten-free and was severely emaciated underneath that inflammation.  After talking to a doctor (not your typical doctor, very knowledgeable about Celiac's and autoimmune diseases as she has rhumatoid arthritis) and my naturopath, it may be that toxins from eating gluten had been stored in that inflammation / extra water weight, and when I went gluten free, it was all released at once.

Drink TONS of water to help your body clear out that junk, eat only whole foods.  Also work with a really good naturopath or integrative type doctor (unless you can find a traditional MD that is actually into whole body medicine...), to get all your vitamins checked and work with them to build yourself back up.  It has taken me since diagnosis in 2015 to really start feeling better, but then in hindsight, I probably had Celiac's since I was a teenager or early 20's, diagnosed at age 58, and I am now 63.

[elf41980]

Has anyone been diagnosed with peripheral neuropathy? 

[Ennis-TX]

1 minute ago, elf41980 said:

Has anyone been diagnosed with peripheral neuropathy? 

And Gluten Ataxia with it >.< Took over 5 years for me to gain much of my feeling back in the tips of my fingers and toes, and regaining my hot/cold sensitivity. Generally I have compensated for most of it over the years, gluten exposures tend to make me start dropping things again, have balance issues, and ataxia can leave me on the floor unable to move (it has a few times). I had to give up many video games hobbies, and be careful and take it slow with the knife when cutting stuff...bright side I was numbish to pain so I could just superglue a cut bandage and change gloves then go back to cooking (I cook/cater for others)

I think a few other members have it with varying symptoms.

[Beverage]

40 minutes ago, elf41980 said:

Has anyone been diagnosed with peripheral neuropathy? 

No, I did have some symptoms of that, but no official diagnosis. I also had restless legs, and when I get glutened, that's usually my first indication.

[Posterboy]

On 12/4/2019 at 12:28 PM, elf41980 said:

Hi Everyone,

I was diagnosed Oct 1 biopsy and blood with celiac since then following a strict gluten-free diet. Only thing is I feel worse then ever. My legs hurt so bad sometimes most of the time , feels like I cant walk feels like burning and paralyzed. Ive gone for allergy testingand nothing came up. Really nothing has gotten better only worse. I dont understand .

Elf 

 

On 12/4/2019 at 5:08 PM, elf41980 said:

Does anyone think it could be red wine? I’m really trying to think of everything I do.. sorry

 

 

On 12/9/2019 at 2:34 PM, elf41980 said:

Has anyone been diagnosed with peripheral neuropathy? 

Elf,

I have had peripheral neuropathy.....B12 seemed to help...here is link that list Nutritional Causes of Neuropathy...https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/ I/you might also look into researching Thiamine...the hormone matters website has a wealth of information about B1 it is there speciality....more people get low in it than we realize today...the hormone matter site has a nice article about how 1/3 of  those overweight preparing for bariatric surgery are low in thiamine .......it could explain the burning IE parasthesia you feel often described as "pins and needles" ...I hope this is helpful but it is not medical advise.

Posterboy,

[Kendra white]

I have only just been diagnosed myself but I have spent countless hours doing research. Some lucky folks stop eating gluten and that seems to correct many of their issues. It was not that simple for me. I find that I have to omit ALL grains in order to feel better. I was having horrible foot and ankle pain...knees swelling, flu like symptoms. Cutting all  gluten out alone was not enough for me .  Leaky gut is a tough thing to deal with and I certainly believe that is what I have after years of undiagnosed celiac. Try leakygut.com it has been a true eye opener. I hope you get some relief !