Seeking proper diagnosis

[Julianne101]

I'm new to this forum.  My sister was diagnosed with Celiac disease 20 years ago right around the time my 2 year-old daughter developed a swollen belly, prolapsed bowell (constipated), intense sweating, etc.  So, my sister suggested maybe it might have something to do with gluten.  My daughter's gastroenterologist said he didn't want to put her through an endoscopy (her blood test was negative) but I was welcome to try the strict gluten-free diet if I felt like it.   I did, and sure enough, withing a couple of days all of her symptoms disappeared.  I was shocked the first time I got her up from her nap and she wasn't literally drenched in sweat.  So, I decided to try the strict gluten-free diet too.  I was very sick with my pregnancy for my daughter and never really felt good since, lots of GI issues (gas and bloating primarily). I found that my symptoms also disappeared on the gluten-free diet.  So, I have been gluten-free ever since.  I avoid milk (except for cheese) because it causes gas and bloating. 

Fast foward 19 years to just 1 year ago.  I started taking a new probiotic to try to ease menopause symptoms.  The next day I had sever diarrhea.  I thought that was weird, so I stopped taking the probiotic and started to feel better, but then the diarrhea came back a day or two later and remained on and off every few days for three months! It was nothing like food poisoning or the GI bug.   I got tested for parasites and other infectious diseases but everything came back negative.  So, I thought maybe I was developing a more severe form of gluten intolerance.  I also found out that right around the same time that I got the diarrhea, my brand of oat milk had changed their formula and was no longer using gluten-free oats, so maybe that was the cause.

AFter three months, the diarrhea finally cleared up and I became much more vigilent about gluten contamination.  A couple months later I ate out at a restaurant.  The meal was labeled gluten-free, I clarified with the waitress, but the next day the severe diarrhea was back and this time it lasted two months but finally cleared up!  A couple months later, and I am cuurently in my third episode of diarrhea, and I have no idea what may have caused it.

I've been to a Gastroenterologist who has tested me for everything under the sun and finds nothing wrong with me.  My colonoscopy is perfect, endoscopy perfect, IgA 184 (normal range), and several other tests all normal except for high eosinophils.  I've lost 20 pounds and struggle with dehydration. 

I'm very curious, has anyone else with Celiac disease ever experienced anything like this?  Can people have a gluten contamination reaction last for 2-3 months like this?  The NP I saw in the GI Clinic claims my diarrhea has nothing to do with gluten, but I'm not so sure.  I've asked for a referrral to a specialist.  

[trents]

Welcome to the forum, @Julianne101!

Your experience is exceedingly common in the celiac community.

First, regardless of how gluten free the food was in the restaurant experience you described actually started out to be, you have no idea what measures were taken in the cooking, preparation and handling to prevent cross contamination.

Sounds like to me you are either getting gluten from some unexpected source or you have developed additional food intolerances. It is very common in the celiac community to be intolerant to dairy (CMP or Cow's Milk Protein) or to oats (even gluten free oats, the protein avenin) which have proteins similar in structure to gluten and can be cross reactors.

[Julianne101]

Thank you for the feedback!  I realize the restaurant meal was probably contaminated but I had no idea a reaction to gluten could last so long!  I’m hoping I find a doctor who will take me seriously.  

Is Imodium or Pepto Bismol safe to take to manage symptoms?  

[trents]

Imodium and Pepto Bismol are relatively safe when used occasionally. Pepto Bismol will bind with medications. I cannot take it because it will interact with my coumadin. Pepto also contains aspirin in it so it can make platelets more slippery and the aspirin could also cause ulcers if Pepto is used too often.

I'm not saying the restaurant meal is the ongoing cause of your diarrhea episodes. I think more likely gluten is slipping into your diet on a regular basis somehow or you have developed an additional food intolerance. Have you investigated the possible causes of high eosinophil counts? One of them is autoimmune disorders and of course, celiac disease fits into that category.

[Wheatwacked]

Hello @Julianne101,

     It seems you are doing well at avoiding gluten.  Well done.

The most important thing I have to say is that whether or not the NP is right about the diarrhea not being gluten related, and it seems like you self-diagnosed, maybe even against medical advice, I hope you will continue GFD regardless.

You don't need a letter from the governer saying you are sick, and those tests from the doctors saying you are healthy, nothing wrong; just don't seem to be working.🤪

Can you share the probiotic you took?  I might want to avoid that one.  Mostly I get lactobacillus from homemade salt fermented pickles, it got rid of an episode of lactose intolerance I started having not long ago. Yogourt has good probiotics. Beneficial Effects of Yoghurts and Probiotic Fermented Milks; Naturally Fermented Pickles [The Complete Guide].

The key is for eosinophils to do their job and then go away. That is the jop of Vitamin D. 

Vitamin D deficiency is associated with higher blood eosinophil counts. Vitamin D concentrations below 20 ng/mL are linked to a significant increase in blood eosinophils. 

I think you, along with over 40% of the industrialized nation's populations, have long term Vitamin D deficiency.  Our body's naturally upper limit is around 200 nmol/L (80 ng/ml). In addition, Celiac Disease disrupts vitamin D absorption, increasing the severity of the deficit.

         Vitamin D Toxicity   "Between 2000 and 2005, the annual mean of vitamin D toxicity cases was 196."

         Vitamin D Is Not as Toxic as Was Once Thought

For the diarrhea,  Low choline intake (eggs, meat) can cause gallbladder issues, poor fat digestion.  Floaty stools and tow Thiamine can cause Gastrointestinal BeriBeri.  Both would vary with your diet and would come and go.

[Scott Adams]

This article, and the comments below it, may be helpful:

 

 

[Julianne101]

Thank you all, for the helpful responses!  There is so much to learn about how to manage this. As one of you mentioned, I thought maybe I was dealing with additional food sensitivies. So, I asked and was referred to an Allergist who said, "no, food sensitivities wouldn't cause chronic diarrhea alone."  I guess because I don't have any skin reactions or respiratory symptoms.  So, I'm not sure what to make of that or how to even figure this out.

I will be seeing another GI doctor who specializes in Celiac Disease soon, so hopefully he will have some answers.  In the meantime I am barely managing my symptoms.  I'm not eating any hidden gluten that I know of, but maybe it is sneaking in in places I'm not aware of.  I have chronic diarrhea and it's a real challenge to go to work.  For now I'm using pesto bismol or immodium to control the symptoms.  I know it's not ideal, but until I have answers, I'm not sure what else to do.  I'm living on a very simple BRAT diet too.

I have one last question for now....I have terrible joint pain that seems to only come at night. Is that a symptom others have dealt with?  I've tried stretching, massage, etc. but the ache hits different tendons in my hips and pelvis at night mainly. Is there a particular pain reliever that is considered most safe for people with Celiac Disease?  I think I read somewhere that NSAIDs are a concern contributing to gut issues.

[Wheatwacked]

So the BRAT Banana, Rice, Applesauce, Toast (hopefully gluten-free) is very high carbohydrate.  High Carbohydrate Malnutrition is real.  Carbohydrates need increase the amount of Thiamine you need, so thiamine is high on the list of supplements that will help the most right now. 

For general pain and gut issues Alka Seltzer Original. You could try Willow Bark Tea.  It is where they got the idea for aspirin. Active ingredient is salicyic acid which used to be called vitamin B11.

Plain Boiled Chicken. Chicken soup with celery and carrots.

In general try to avoid any processed gluten free foods.  They add stuff to make it gluten like and many react to the additives.

For energy choose sugar and avoid high fructose corn syrup.  The enzyme sucrase, produced by the small intestine lining, breaks down sucrose into glucose and fructose.  The glucose and fructose are absorbed into the bloodstream and transported to the mitochondria where glucose is turned into ATP energy. Brown sugar has molasses, which is antiinflammatory.  I drink lots of Red Bull  and lemonade (made with sugar, not HFCF, for my daytime energy, then eat proteins, fats and other simple carbs in the evening. Taurine is an essential antioxidant like vitamin C.

Probiotics like bifidobacterium from yogourt and lactobacillis from fermented pickles and other fermented foods ( not quickpickled made with vinegar.)  Two brands I know of are Batampte and Bubsies.

Choline helps with fat digestion. Eggs and meat if you tolerate them, phosphatidyl capsules if you don't.

[Scott Adams]

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