Feeling Worse Since Going gluten-free And Seeking Some Advice

[jennigoose]

Hi, all.

I'm new to this forum but have been gaining valuable "celiac insights" from your posts for awhile now. So, thank you for all of your helpul tips and advice! I was wondering if I could solicit some assistance regarding how to proceed next in my recovery journey.

I have been gluten free for a little more than 6 months now following a strongly positive blood test and endoscopy. And, not to be a total Debbie Downer, but I have never felt worse. After a visit with three separate celiac nutritionists (I am compliant with the diet), being tested for SIBO at a major celiac center (I definitely had it and was prescribed antibiotics), visiting a rheumatlogist (the only thing in my bloodwork that was rheumatlogically amiss was the elevated ANA), undergoing an enterography (all normal but I did have a pretty violent reaction to the contrast agent) and being prescribed pancreatic enzymes for suspected EPI (they don't really seem to be helping), I am wondering where to go next.

The celiac diagnosis was made almost by accident. I've had horrible issues with my periods for years, coupled with positional vertigo and migraines. Only fairly recently when I had trouble digesting fat and dairy did a savvy gastroenterolgist recommend I get tested. Upon going gluten free, my symptoms appear to have "blossomed." I have recurrent vestibular episodes (that's what has been the most distressing/debilitating), periods of low grade fever and vomiting, arthritis pain, and diarrhea that seemingly appears out of nowhere. Has this happened to anyone else?

From what I've read on this forum, the healing process does take time. (I'm 33, so I can only assume Ive been unkowingly living with this disease for quite some time.) But I was hoping to see at least some improvement with my periods and vertigo upon going gluten free, but instead have introduced a whole host of new and interesting symptoms. It's a bit tough to stay motivated.

[notme]

is it possible you are still getting gluten somewhere?  even a little bit?  that's wierd with the fever, though.  <have you been tested for lyme disease?)  are you eating dairy?  vertigo would be a neurological symptom and neuro is always the last to leave the symptom party (sorry) i still have balance issues (less and less, but i guess i'm gonna hafta give up tightrope walking LOLZ j/k )

[jennigoose]

Hi, notme!

The dizziness is a bummer, no? Sorry to hear you're dealing with it, too. There goes our lucrative circus careers...

I don't think I'm ingesting any hidden gluten. The whole house is gluten free and we've purged everything down to my lip gloss. I have read on here that some folks are super sensitive; I do eat certified gluten free bread products so I'm wondering if it could be that. Although, I used to eat bagels and even "faux meat" made out of straight gluten all the time (can you believe it?) and still felt better than I do now. All the tests for lyme, Sjogren's, lupus, thyroid, and even parvo all came back negative. So, I agree that the fever's definitely bizarre. I've had about four different "episodes" all since going gluten free and in every instance I can't seem to find a glutinous source.

[jennigoose]

Oh, and no dairy or eggs for this girl, either. I've been vegan for two years and a vegetarian for nearly 15.

[RMJ]

Have you had a repeat blood test to see if your antibody levels have gone down?

[jennigoose]

Have you had a repeat blood test to see if your antibody levels have gone down?

Hi, RMJ.

I did have my levels checked by the celiac center to see if they were trending downward, but we were not quite at the 6 month marker yet. My TTG actually went up. The doctor said that it could be attributable to the difference in sensitivities between the two tests and that my levels just have not gone down yet (the first test was done by Quest and the second one was done at a hospital) or it could be due to gluten somehow sneaking in. I get another one in a month when I go back for my follow up.

Do high TTG levels always correspond with dietary compliance? I can't imagine how they could have truly gone up seeing as I used to eat bagels everyday...

[RMJ]

You can't compare tests between different labs, each test manufacturer sets their own "units." So at this point, with only six months gluten free, it really just says you are not healed yet.

[Loretta trying]

 I​ have been gluten free (I think) since August first of 2015. I have discovered through PAINFUL trial and error that I also negatively react to anything in the nightshade family (potatoes, tomatoes, peppers), also sweet potatoes (go figure...), I'm not sure about dairy yet. I'm afraid to try it although I have eaten Havarti cheese with no reaction. Goggle "Jennifer's Way". She has written the most excellent book that I've read about our condition. The first half is all about HER story. The second half is filled with REAL info about feeling good again. If I had not found her book...I would think I was freaking CRAZY. I feel so strongly about the information in Jennifer Esposito's book that if you can not afford the price...I WILL BUY IT FOR YOU!

 

I want to add that, I cried today after spending 6 hours of my life making chicken stock and it was still in a form I couldn't eat. Tomorrow will be better when I turn it into the BEST SOUP EVER!!

 

Some days are pity parties and some days are great. Good luck on your journey.

[squirmingitch]

jennigoose, Have you been eating oats? If so, you might try eliminating those & see how you feel but give it time, not just a couple of weeks. A small percentage of us have real reactions to even certified gluten-free oats but if you're going to eliminate oats then you also have to eliminate products that have been cross contaminated with gluten-free oats. I was loving Udi's bread & got glutened simply because it's cc'd with oat flour. Now please, anyone reading this do not go off the deep end & automatically assume you have a problem with gluten-free oats. Only test that after you have exhausted all other possibilities of cross contamination.

 

Loretta trying, I'm sorry about your chicken stock but I love the attitude you have & I bet that soup tomorrow will be lip smacking awesome! In fact, what time should I arrive?

[cyclinglady]

Time and patience.  If anything, getting my celiac disease diagnosis has taught me that much!   Other AI issues might develop or they might not.  I would just work on staying gluten free.  

 

Squirmingitch is right about the oats.  Some celiacs do not tolerate them.  My advice is to get whole unprocessed foods (as much as possible) and avoid going out to eat.   

 

It took me two years to feel good and I knew the gluten-free diet well since my husband has been gluten-free for 14 years.  I had some little intolerances (things like xanthan gum bothered me) but nothing bad.  Anemia was actually my only noticeable symptom when I was diagnosed.  

 

Again, time and patience!  

[manasota]

Hi Jennigoose!  Welome!  I believe you will get better with time; as you were only 33 when diagnosed.  You have gotten the best advice already.  Focus on being totally gluten free.  If you can, eat only whole foods you make yourself.  I do have to admit that even after 5.5 years of being gluten free, I still feel worse than I did before I was diagnosed (and ate plenty of gluten).  I attribute this partly to that fact that I was 60 yo when diagnosed and partly to the fact that we all heal at different rates and to different extents.  Just keep working hard, remain optimistic, and do your best.  Really, that is your only good option.  Always remember that you are not alone in your struggle with this life-altering disease.  I wish you the very best.  Love yourself.

[JazzyJake]

9 months on the diet and no improvement with the peripheral neuropathy and balance issues. Fewer digestive problems though, excepting wretched constipation for which I haven't found a solution. I question restaurants sometimes. (Somewhat) good news: I've dropped 25 pounds.

[Irma]

Even though I am eating gluten free I quickly discovered that I react violently to certain preservatives and gelatin - go figure.

So for some people just going gluten free is not enough. You will need to discover what other foods also need to be eliminated.

It's a journey which goes quickly for some and takes ages for others but you will get there )

[mommida]

Keep a food journal to track down any other food sensitivities.

It could be your gall bladder. 

[Galixie]

You mentioned that you're vegan. That coupled with the malabsorption of nutrients that goes along with celiac disease puts you at a high risk of being deficient in vitamin B12.

B12 is essential to the human body. Not only is it needed for blood production, it is also responsible for repairing/maintaining the myelin sheath that coats every nerve in the body, allowing them to successfully send signals. It is also known to affect fertility. Basically it's needed all over the body for multiple things.

I had wildly irregular periods for over 20 years before my B12 deficiency was discovered. It took less than a year for my cycles to correct themselves, without any additional measures, after I finally started getting treatment.

Chances are good that your B12 level has not been tested, because it is not a test that is frequently requested. You may want to check your records to see if you've been tested, or just ask to be tested. Do keep in mind that the common reference range of "normal" is huge. It goes from around 200 to 900 pg/mL. However, symptoms of deficiency can develop with levels below 400 pg/mL.

Symptoms can include things like:

Fatigue (extreme fatigue where you sleep for hours on end but are still tired when you're awake)

Dizzy spells/Balance problems/Vertigo

Peripheral neuropathy (sensations of burning or tingling or numbness in the extremities)

Mental confusion/Lack of concentration/Short-term memory loss

Tinnitus (ringing in the ears)

Anemia symptoms such as breathlessness (even small amounts of exertion lead to something collectively referred to as 'the sighs'), heart palpitations/arrhythmia, weakness, pallor, etc.

It can be a good idea to also have a folate test done at the same time, because high levels of folate can mask some of the markers of low B12. Low iron levels can cause similar problems with interpreting test results. But the two tests that would be most helpful (along with the typical standard CBC) are serum B12 and MMA (methylmalonic acid) tests.

An active B12 test does exist, but it is usually not covered by insurance and most doctors would not be willing to order it done.

Untreated B12 deficiency eventually becomes fatal, so it is a good idea to at least get it checked out so you can rule it out as a cause of your continuing misery. Sorry for the long response, but I hope it is helpful.

[sjb]

Once I became gluten intolerant also could not tolerate milk products (protein similar to wheat protein) or eggs. Have you been IgG tested for food sensitivities? I found that helpful. Knowing what I know now I would have rotated foods more often & kept food journal.